How I’m Navigating Disability Support: Choices, Challenges, and Changes

 What would a good independent support worker look like to me? Some support workers, whether independent or agency-based, are, let's just say, not suited to the industry. What I consider ineffective support might be exactly what someone else needs. This isn’t a new industry, but it is a booming one, and that’s the issue. Some agencies tolerate ineffective staff because they struggle to attract well-trained, effective staff—and that’s a cost to them.

It’s important to remember that funding for support doesn’t only come from the NDIS. There’s also state funding, superannuation (retirement plans), and programs like hospital-at-home. Each of these can provide different types of support depending on the circumstances. Common sense needs to be applied on both sides—service providers and clients—so that these systems are more inclusive and effective for everyone.

With the legislation changes, I’m glad that support workers will be required to have qualifications. This is a good thing. In my experience, I’ve had the good, the bad, and the criminal in support. It’s not entertainment—if you’re asking for support through your plan and paying for it, it needs to be used wisely. Yes, there’s extra accountability that agencies put on staff, but it needs to be there to ensure quality care.

Independent workers often feel constrained by agencies when, in reality, they are being protected. The legislation I would have to abide by is a major consideration for me. I’m in SIL (Supported Independent Living), and I’m settled here. I’m going to talk to management about a roster change, but other than that, I feel supported and challenged to grow at the same time.

The laws and other considerations I would need to think about are not just related to disability services but also:

• Workplace health and safety
• Privacy considerations
• Progress notes
• My values and their values—do they align? Are they going to push religion on me?

I also need to consider their availability for work, as they would likely be on a casual basis. This could become a major issue. Here are other key questions I need to ask:

• What tasks would they be doing? (This is tricky because I’m settled in SIL but actively looking for a studio for YouTube and the podcast. Would they need to be okay appearing on camera?)
• Do they need to have the technical skills to edit, or are they willing to learn those skills?
• Are they okay with helping with housework or admin tasks for YouTube?
• What if the role grows beyond the scope of a support worker? Do I need more of a PA who is willing to help with care tasks?
• Can they help with content creation, and what would that look like? Or is it more about prompting me?
• Can I trust them?
• What background checks do I need to do?
• Can they drive?
• What do they charge for transport?
• Do I pay for fuel, or do they claim that on tax?
• What types of insurance do they need to have?
• What routines do I need to have in place?
• Are they supportive of my efforts to monetize my content?
• What type of dress code would I expect from them? Do we create an “informal support uniform,” or should we create merchandise for them to wear as the face of YouTube?

These are all important considerations. The big question is: What does support look like to you? Because it looks different to everyone, and that’s the major issue. Let’s leave it there and consider what support is going to look like in the future. Support workers will now need qualifications, not just lived experience, and that could be a massive issue for people who have lived experience but not the qualifications to back it up. But having qualifications isn’t a bad thing at all—especially if it leads to more inclusive, thoughtful care for people with disabilities.