Being born in the early 80’s, my generation was the first to really embrace video games.
When Tetris was invented in 1984, and reached Australian shores from Russia a few years later, most kids at my school were obsessed, and I was no exception.
I took great delight in rotating pieces of the puzzle to fit into vacant squares, and as the game got faster, my mind would quickly adapt and as sure as a piece was heading for vacant squares, sometimes I’d have to shift my thinking and move pieces at the last second, to get a better fit.
You might be wondering, ‘what in tarnation has this got to do with disability housing?’
A few days ago, as I was chatting to a support coordinator, we were putting our heads together, to try and work out whether a particular house was going to work for their participant. We were chatting about how one tenant may move from House 1 into House 2 and if that happened, then their participant could be a good fit for House 1.
But… and there’s always a but… if their SDA level changed (as they had applied for a review) then that house won’t be suitable, so we may have to look at House 3 being a possibility.
Another but… if we move them into House 3, the other tenant lined up for House 3 won’t match, but that person could match House 1!
Yet another but… if a participant in House 2 ends up requiring active nights, then they will need to move to House 3 as well, and the two could be a fantastic fit!
Pheeeew! After going around in circles a few times, and wiping the sweat from my brow, I said to the coordinator ‘I feel like I’m playing human Tetris!’
We laughed for a second, and then realised that it’s really not funny, in fact it is far from it.
After a 5 minute chat about how things have changed, the state of Covid, how our kids want iPads for their birthday and we would of been happy with a Barbie and a 10 pen (yes our age is not lost on us… both turning 40 this year!) we realised there was something in this Tetris analogy.
Having to move people around, just when you thought you had the magic solution, is the result of a system that does not tailor solutions to individuals, we are forced to tailor individuals to the solutions we have.
I’ll say that again… We are forced to tailor individuals, to the solutions we have… and we can only come up with solutions within the extremely tight boundaries of the system.
Doesn’t sound anything like what I set out to do!
My 20 years in community services, have been spent tweaking staff, finding best fits, doing everything I can to keep people out of care, whether Aged Care facilities or residential disability services. I’ve done a good job and helped a lot of people.
But I also came up against people I couldn’t help, because I couldn’t modify their house, I didn’t own any houses to move them into, and I had no idea how to build or finance any.
So lots of those people ended up in Aged Care, hotels, caravan parks, shipped off to Grandparents, into Residential Support Services, and some into independent living arrangements that really did not suit.
I felt defeated. Why couldn’t I help them?
I stood beside their loved ones as they packed up their rooms, and waived them off. I kept in touch, I counselled them, we did all we could to keep a lifeline with their known staff, working with them here and there, but eventually funding changes, and we lose our grip, and relationships built over 10 or 20 years with families, are lost.
When I first looked into Disability housing, and mostly Specialist Disability Accommodation, my first thought was ‘I can create something for the people that have no other options!’
That thought fuelled me, it lead to countless nights reading legislation, sleepless nights on how I could finance a house, more sleepless nights when I realised I needed more houses, and cold sweats when I discovered the costs.
The ‘solution’ I thought I had created, was just a drop in the ocean.
Once I had partners, once I had financiers, once we had builds, I realised we needed more solutions. I realised we needed different types of solutions.
But also realised we are bound by a system that wants ‘one size fits all’ solutions… and more specifically, is bound by funding ‘reasonable and necessary’.
I’d say it’s pretty reasonable and necessary for people with a disability, to live how they want, where they want, with who they want, and live like anyone else!
A big issue is, this is where most property developers are at, copying the first round of solutions… and barely scraping the ‘reasonable and necessary’ bottom of the barrel.
The problem with this, is that most of us that want to create change, are on our third, fourth or more ‘solution’, and we realised early on, that these are not the bee’s knees we thought we were creating when we started out.
Even with the best of intentions, a lot of us have built houses ticking boxes, boxes created by people who do not have a disability, and don’t have lived experience of what is required vs. what is needed.
But we are changing, thanks to the voices that should have been driving this all along!
We are no longer trying to fit people into spaces that do not work for them. We are no longer trying to move people into locations because there is a vacancy and they are desperate.
I’m ashamed to say that at times, we’ve done this. We’ve done it as housing providers, SIL providers, support coordinators, planners, and yes, even families. Out of desperation.
But desperation does not create inspiration!
An option does not mean that we are supporting someone to live an inspired empowered life.
It’s just a vacancy that we’ve all collectively made work. For now!
In always wanting to be more and more person centred (and I believed I was already more person centred than most, but always looking to improve!) I’ve been guilty of making something work, that I had niggling doubts about, because of desperation… and I’m not afraid to admit it, learn from it and change.
As we go along, I’m proud that our thinking has changed. We are looking at things from so many more angles. We are no longer driven by the opinions of ‘experts’, OTs, Access Consultants, providers, support coordinators, SIL’s, and even families.
Because if there is one thing I’ve learned from Tetris… and working with humans… a good solution is never as good as the BEST solution.
My whole life is focused around finding the BEST solutions, and if short term options are better than Aged Care, or other unsuitable ones, then they should still just be short term, while an absolute tailored best fit is found.
And that is possible, even within the tight boundaries of a system that is set up with the illusion of best practice.
Other than turning 40 this year, loving Tetris, and never truly finding the best 10 pen on the market… what else did my Support Coordinator friend and I have in common?
A young child with Autism.
Maybe that is what has changed some of my thinking, I don’t know.
But if you ask me whether, in 20 years, I want this same system of housing for my child?
No bloody way!
Let’s keep working, keep improving, keep holding developers accountable, keep tweaking designs, keep adding assistive technology, keep adding more support options (adding ILO-Individual Living Options on top of SIL-Supported Independent Living is great, but let’s not stop now!)
Because if anyone is going to change the system, move the boundaries, create a revolution in disability service and housing, it doesn’t need to be ‘the experts’!
Let us all support and empower people with disability to create this revolution, for those that matter most, themselves!