We’ve had a lot of support workers. Here are 5 reasons some of them didn’t make the cut.
Over the last few years as my son’s disabilities have progressively become more challenging, there was one main thing that I fought to have included in his NDIS plan…
.. funding for support workers.
Getting the NDIA to agree that we needed it was hard. It took 3 years of relentless fighting before they finally conceded that it was, in fact, ‘reasonable and necessary’. I remember the moment our SC called and told me that we’d won because I burst into relief-filled tears. Finally, help was on the way.
Support work was fairly foreign to me. I didn’t know what was reasonable to expect or how to begin finding the right people. I knew there’d be some trial and error but at that stage, I figured that ANYBODY was better than nobody.
The early days were a little… awkward. I was letting strangers into my chaotic home, and I was also supposed to let them help me. As a millennial, I wasn’t raised to accept help and the whole thing left me feeling vulnerable and exposed. Looking back, I settled for less than I should have but I simply didn’t know any better.
Fast forward to now and I can’t even count how many support workers have been in and out of our lives. While you’d be forgiven for wondering if my expectations are simply unrealistic, I can honestly say that I wish that were the case.
There are a number of reasons that we’ve released our support staff, but when I think about each of them individually, I can really narrow it down to just 5.
1) They weren’t actually support workers
I quickly realised that the industry is a big one and that some people just want to cash in on people’s disabilities. They don’t have any qualifications, their experience is flimsy, and they’re under the impression that support work is just arcade trips and bingo. When our son was happy and willing to play, they were all smiles, getting paid to play with blocks. Then the first time they saw our son meltdown and yeet a fork at my retina, they had no idea how to help.
Disability support work requires learned skills and knowledge. Nobody instinctively knows how to calm an autistic meltdown, nor do they know the intricacies of the NDIS. If there is a PBSP because of BOCs, they need to check for restrictive practices (and be registered if there are). If an OT suggests deep pressure for proprioceptive input, they need to learn the person’s sensory preferences. If the previous two sentences would leave them more confused than I am building a flatpack, maybe they’re not ready to be paid for disability support.
This is not an entry-level role and when it’s treated like one, the consequences are enormous. Already-scarce funding gets wasted, health and safety is at serious risk, and penalties can be pretty hefty if you make a big mistake. In my experience (and as cliché and cringey as this sounds), true passion is what makes a life-changing support worker. It makes them want to become qualified, want to learn before charging the big $$, and want to be as helpful as they possibly can.
2) They had no initiative
Look, I understand. When you’re a brand-new face in someone’s home, it might feel weird to just start sweeping the floor, but that’s not really what I’m talking about. I’ve had a support worker sit and score my other kids’ handball game while I simultaneously cooked dinner and tried to manage my dysregulated and violent son. I’ve had a support worker watch TV with my 10-year-old while my son screamed during my long-awaited telehealth appointment. I’ve had a support worker scroll his phone while there were dishes piled up on the sink because I was dealing with meltdown number 346 of the day.
As participants, we want and will train our support workers on the specifics of our circumstances. We will happily answer their questions, in fact we want them to ask. What we won’t do is teach them how to be a support worker and when to pick up a broom.
3) They didn’t bring me relief
It took me a little while to realise it, but some of our support staff just didn’t feel like help. I wasn’t completely relieved to see their car pull up and I didn’t breath out until they’d clocked off. Sometimes the reasons were obvious, but less so at others. I realised that even if I couldn’t pinpoint exactly why, there was something about that person that was making me uneasy and that was reason enough. Incidentally, I’ve been able to look back in hindsight and generally figure out what it was.
4) Excuse my bluntness, but they were lazy
Everything was the bare minimum. My son wants to play with magnet blocks? They’d just sit beside him in silence. My son wants to play at the park? One quick push on the swing and they’re telling him it’s time to go home. They’d look for every shortcut and find any other task they could technically pass off as ‘supportive’.
5) They weren’t enabling choice and control or dignity of risk
This can go hand-in-hand with my point about laziness, but it also stands on its own. As participants (or carers of participants), we have choice and control over our providers, but we also still have choice and control of our lives. Steering the participant towards what the support worker wants is removing choice and control. Not allowing a willing participant to cut up their own food is not honouring dignity of risk. While it’s often done with good intentions, removing CAC or DOR stalls skill development, teaches helplessness, undermines the support relationship, and impacts behaviour and wellbeing.
If you employ support workers, (and I say this with love!) this list is for you just as much as it is for them. Hiring well is only the first step, the real decider is in the professional development that you provide, the culture you create, and the example that you lead by. The families that stay are the ones who feel that investment, and honestly? So are the good support workers.