Moving into my own SDA apartment has been an ongoing lesson over the past two years. I'm not only learning to live an independent life away from family, but also what rights I actually have as a person with disability. I moved into my new apartment in March, 2019. I had the usual nerves and trepidation that comes to anyone who are moving into a new home. But I also had a few other issues thrown on top of that. Previously to moving into my apartment, I had never used a support worker nor had I used any disability centred equipment, except for my wheelchair. I had no idea what to expect with either.
Unfortunately for me, I moved into my apartment with all the wrong equipment. I mean, who knew you couldn't just buy a hoist sling or a commode off the shop floor? Me, I didn't know. It turned out there was quite a bit I didn't know. I was so desperate to move into my own apartment that I didn't question anything. One thing I should have questioned was the housing model that I was moving into. On paper, even today, everything looks as it should. The housing provider or SDA provider and the support provider or SIL provider, are two separate companies, which is what everyone should look for. It's what is hidden within the contract between these two companies, which will end up dictating how we live as individuals.
I currently live in an apartment building that consists of 110 apartments, and six of those are specialist disability apartments. I moved into this building thinking I will be treated as an individual. That I would have my supports tailored to me. I was told that if I had any current support workers, I could bring them along to work for the new SIL company, which is great. Only, I didn't have any. That was okay though, I thought. The new company would obviously discuss with me what I would like in a support worker and what my needs are. So that who worked with me, would be tailored with both myself and the worker in mind. Only this never happened. In fact, I was told early on that I wouldn't have any saying things. That I would have no choice and control. That should raise a red flag and it did.
I was so desperate to move into this apartment, into the location where it is that I sucked it all up and went ahead with the move. So that's what I did. I moved in. What I found when I moved in was not the individual standard support model I had been promised, but the outdated prehistoric model of a group home transplanted into a modern day SDA. It was a fight for our individual rights from day one. We didn't have a choice of who worked with us. Our support wasn't individualised. So we didn't get our own support workers. All support workers were shared over all six tenants living in the building. So again, any selected support workers, when you wanted them, was rare. Often they would be assigned to another tenant for that day or shift that you wanted them for.
Because we were treated like a group home, there was no consistency in our rosters. If other tenants' times change, then it would affect who worked with me. Having the same worker on the same shifts never happened. So it was difficult to get any sense of routine or familiarity. Speaking of our changes, at times I have been forced to change my allocated personal care shifts to other times. So that it'll fit in better with other tenants. So that it was easy for management to roster our supports. They'd like to roster our support workers over several tenants. And if individual support times overlapped, then management was not happy, but that's not how this works.
I'm an individual living in my own apartment. What other people in this apartment building does should not affect me. It doesn't affect the able body people here, so why me? No one else here has to have their dinner half an hour after their next door neighbour. They can have it whenever they like. Only out of this tired support model, I'm not seen as an individual person. I'm only seen as one part of a project that has to tow the line. One component of the SIL, which is most important, is the emergency backup 24/7 onsite service, or the shared support that covers all SDA tenants in a building. This means that if any tenant needs assistance outside of their personal care times, then there is someone onsite who can help them. This usually works well. However, under the model where the SIL provider runs both the emergency 24/7 shared service and the personal care support, it can lead to the shared support component being misused.
At times here, shared support has been used to fulfil individual personal support shifts, which then renders the emergency backup service problematic. If we call the backup service and they're in the middle of a three hour personal care shift, then we either have to wait those three hours. While the person in the middle of their usual one-on-one shift has to stop the shift, while the support worker tends to the other tenant's call. And how is that fair? You could be in the middle of being helped in the shower, while the support worker helping you needs to run off elsewhere. That's not what we pay for.
Your personal care shift needs to have a support worker solely centred on you. They shouldn't be running off elsewhere to answer someone else's call. Also, if you're the person calling for backup support, you shouldn't have to wait for that to happen. I've been on the receiving end of both sides of this unpleasant stick. So in short, it is important to know exactly what type of support model the SDA you are moving into has. To be able to live your best independent life, it is vital that you have the one that provides you with the best support, choice and flexibility, so you can live your most extraordinary life.