Cast of characters
- Renée is a disability care worker at a small family-like home and at a larger group residence for people with physical disabilities. She's mum to her 4 kids and a pet dog called Billy. For 'me time' she likes to browse her Ipad on the couch, chill out or watch foreign language movies with friends. She loves The Intouchables.
- Jessie has been living at Burleigh House with her 4 housemates since 1998. She likes to plan things and to know what comes next. She can't stand crowds but loves Renée's dog. She likes browsing in libraries or charity shops. Sundays are the best when Renée's daughter Rachel comes over and they play games.
Jessie goes to her day program at the centre down the road most days of the week. But today’s different. You can see it by the sparkle in her eyes. And how she moves our chat to the topic of water and swimming.
She rummages through her bag looking for her swimmers “Aah, got them!”. On the kitchen counter sit her drink bottle and the sandwiches that she just made for the trip with Renée. It’s 9 in the morning here at Jessie’s home and we’re about to go out swimming. Jessie's got it all worked out and lets us know step-by-step like in a movie script. How Renée’s gonna reverse the car. Whose gonna sit where in the car. And which route we’re gonna take to the pool. Not to the small swimming pool down the road where she usually goes. But to the Aquatic Centre half an hours drive in the Olympic Park.
But the next 5 hours or so of 1:1 time aren't intended to be about following the herd down the service swim lanes, minding the all too common 'personal-professional' dividers. Jessie and Renée have known each other for over 6 years now - ever since Renée started doing home shifts at Burleigh House.
Renée has had a lot more time for Jessie every second Thursday since Burleigh House secured government funding for Jessie to have an 'individual activity' with a carer. The activity is bound by the budget - 5 hours of Renée's time + $20 of spending money for things like ticket fees or a cup of coffee. Activities are decided upon in the ‘Individual Planning Meeting’ once every 3 months that Jessie, Jessie's mum, Renée, and the other carers attend to review progress and set goals.
The objective for the activities isn't to break Olympic records but build each fortnight on Jessie's capabilities. They start with what Jessie enjoys doing. Like going places of interest (the library, the zoo, or the botanic gardens for a walk and a coffee). Or making connections (to Jessie's sister who just got a baby boy, to Jessie's friends in other homes). The process to come up with ideas tends to bound by what Jessie and her carers know exist, and what's already happening in the local area.
The actual activity then blends Jessie's wishes with a pre-bargained goal. Like Jessie says "Let's go hang out in the hot spa first." For Renée to reply, "Fine. But only after we do laps in the swimming lanes and then go treading in the reverse-flow pool."
Renée applies the same bargaining approach to Jessie's other every day activities. At the shopping mall, Renée teaches Jessie how to step onto an escalator. And at the library, Jessie is repeatedly prompted to use her library card and go through the sequence to check-out books.
Whatever the outing, they usually bump into other pairs like them. With an individual carer and a client. The interaction that ensues lasts no more than a friendly 5 minutes. The relationship that seems to be emphasised is that between professional and client - rather than between clients.
Beyond swimming and everyday errands, it's been hard to broaden Jessie's capability set. The right size and shape opportunities don't exist - and in the current system, it's not clear whose role it is to catalyse fresh opportunities.
Jessie's clear what kind of opportunity she'd like. She absolutely loves animals - as evidenced by the plastic figures in her room. The books she picks in the library. Or the ducks and birds she spots in the park.
That's why Renée has been looking for a place where Jessie could volunteer when they meet-up. The most feasible was volunteering at the local animal shelter. But the shelter's volunteering policy requires people to help at least once a week. And since Renée only gets 5 hours every second week to accompany Jessie to external experiences, that didn't work.
Renée loves animals about as much as Jessie does. She has a dog named Billy and has been frustrated by the lack of dog grooming appointments available. "They're in such demand at the moment!" The earliest she could get was in a couple of months. At the mention of Billy, Jessie asks Renée, "Are you gonna walk him when you get home? He must be missing you. Poor doggy!"
Renée manages her family from work and her shift schedule when she's at home with her kids. Her Iphone keeps her connected and organised. She tries to blend the two together - as seamlessly as she can.
Jessie meets some of Renée's kids almost every time they go out together. They meet Hannah for lunch at the shopping centre. Or pick up Rachel after school to go to the park where Jakob joins them. Jessie's eyes light up when Renée tells her what new things the kids have been up to. Like Rachel performing in the school play. Or Nathan hosting his own photo exhibition. Sometimes Renée even invites Jessie along to school events.
Renée doesn't really distinguish between being a 'paid' carer to Jessie and an 'unpaid' carer to her four children. But that's quite different to her relationship with clients at her other place of work - a larger residential community center where she does 3.5 hour, half-shifts. There, she does little more than wash and feed people. It's an institution that happens to be in the community. It's not really a home.
Renee has long days away from her own home. She gets up at 6am to get her two youngest kids to primary school. Then she does a half-shift washing clients at the residential community center. She tries to make time to have lunch with Hannah and Nathan, who are in trade school. Once her youngest kids are back home from school, Renée picks up a second half shift at 5pm. To put clients to bed.
Then it’s back home at around 8pm to put her own kids to bed. And to do the house work and wind down on her lounge. She tries to go to bed at 10 pm. "That's ideal", Renée says. "But in reality it's more like eleven or midnight."
Weekends have a slightly different rhythm. She does the mechanical "half shifts" at the other place as required. But as much as possible she works at Burleigh House doing day shifts. The housemates are usually with their parents for the weekend. Only 1 or 2 tend to stay back. Then they do short weekend trips to the park or the shops. Or stay at home playing games, reading and doing the house chores together.
Every so often, Renée does the sleep-over shifts at Burleigh House. They start at around 7pm with dinner and handling the prescription medication and go until 7am.
All added up, Renee works a lot of shifts. More than 60 hours per week, weekends included.
In her words
They've got lots more training on following procedures. So next time I can’t meet Jessie because of my other job. They got a fire training on that I need to attend. And there's one on How to lift, Operational Health & Safety Policy, that sort of thing. Whatever their rules and regulations require.
I got the job [at Burleigh House] through a friend of mine. She knew me from the playgroup I was running when I was a stay-at-home mum and wanted to get back into disability care.
I don’t know how much longer I’ll be able to do this work. Services go for qualifications these days. Soon you'll have to have a higher certificate to get any job. But I don’t have a qualification. Every time I started part-time studies to I couldn’t commit the time with a family and the shift work. I read up and browse information on the internet in my time. I like getting another opinion - a scientific one from researchers.
I’d love to get into teaching. I think I've got a lot of experience to give. I’ve been a care worker since I was 16. And volunteered since I was 10 with my mum when she worked her shifts in the care home.
The care system with its policies and procedures seems unnatural. People don't interact like that in normal life. I think it’s natural for people to know each others families. That's why I like working with the Burleigh House guys. At the other place, I couldn’t bring my daughter with me. That'd be against their policy. It's got much more procedures and regulations than Burleigh House.
People like routine in their lives. It gives them security. I always talk through with Jessie what we're going to do. And sometimes I can bargain with her for a new activity for her development goals. Over time it might become a new routine.
I’m a worker and a morning person – always been. I struggle with people who aren’t motivated. I wish my youngest child would get up a bit quicker in the morning. And my kids would all be motivated to get a job some day.
There are groups of people who do really well. They’ve got a community around them. Most of my clients don’t have one.
I get a bit passionate about what looking after people means. I discuss a lot with the other care workers. We all got different opinions. For my own kids I want them to be motivated to work like me. And turn alright, like my foster daughter did in the end.
Connecting - Catalysing
The family person she is, Renée is proud of her daughter performing at the school gala. She's equally proud when she sees Jessie try out an activity for the first time. Trouble is, there aren't always existing activities that fit Jessie's specific interests, in the time and resources that are available.
Renée feels like she can’t change that part of the system. 5 hours is 5 hours. $20 is $20. That's despite all the nice words about individual planning and capability building in the 'Living Life My Way' policy framework.
So how could the system enable carers to make new opportunities? Not just connect to existing opportunities. Perhaps Renee and Jessie could set up a pet grooming business for Renée's dog and those of her friends? And in the process generate resources for future activities?
Professional - Personal
Organisational polices and regulations tell most carers to leave their personal life at home. To be a professional is to work shifts - doing the washing and the dressing - without their personal lives interfering.
Burleigh House is an exception. It's smaller. It's family-run. And even though it gets the same government funding as the rest, it's managed to develop different internal procedures and safeguards. So that Jessie and Renee can really be part of each other's lives - on and off the clock. How could we recognise the 'positive deviant' homes like Burleigh House and carers like Renée, and give them a platform to model their nitty-gritty practice for others?
If the measurable goal for carers was to help increase people's interdependence - versus their independence - perhaps there would be more of a place for less formal and more reciprocal carer-client relationships? Perhaps we'd even move away from the carer - client distinction all together.
Renée wonders if she’ll be able to hold her care job in the years to come. Even though care workers will be even more in demand with an aging population. That's because employers are increasingly talking about 'developing their workforce' - which means asking their employees to be credentialed. Renée doesn't want to return to school to read out of a textbook, memorise risk management facts, and take an exam. All for a piece of paper saying she's qualified.
How could the system understand quality as distinct from a qualification. And recognise Renee's whole life - her relationship with her kids, her role as a foster carer, and her 30+ years of experience? Surely the sign of a 'good' carer is someone who takes pride and pleasure from helping others. How could we re-design hiring processes to seek out people with that pride and pleasure? And help them to apply the same standard to the people they help as they do to their own kids? A standard that we might call flourishing.