Accessible service information: help people choose disability support

Making decisions about disability support services involves great complexity and uncertainty for consumers. Under the new National Disability Insurance Scheme (NDIS), over 460,000 Australians with disability and their allies will need to make many of these crucial decisions for the first time.

For an economy to function and flourish, consumers need to be able to make confident, informed decisions. When that’s happening, providers will know which services to supply to meet consumer needs, and will have the capacity to grow into new areas. Having spaces for consumers to give feedback and have their voices heard is a key ingredient in this process; that’s why we started Clickability.

So it’s important that as a community, we find ways to empower consumers in the disability industry to do just that. I’m not talking about the skill of decision-making; I’m talking about making sure people have the right information. We need to create an “information economy” – sources of information that people with disability and their co-decision-makers can use to make good decisions about their support purchases.

It’s not as simple as an equation of, “more choice = better”. I know that one of the times I feel most overwhelmed (and this might be an overshare!) is when I’m in the supermarket trying to choose which toilet paper to buy. There is SO MUCH CHOICE. Do I buy the biggest, so I don’t have to go back to the shop for weeks? Or do I just get the 6-pack? Do I save money and get the home brand one? Or do I spend a bit more and something eco-friendly? And wow, if I do that, which one – brown, white, or frogs?!

I need information about myself and my own needs, preferences and values to make that decision. I also need information about the product, and I need to be able to trust the information. Is it really cheaper, or are they just displaying it differently? Is it really eco-friendly, or is just a clever logo?

It’s also not as simple as an equation of, “more information = better”. I recently purchased a laptop and had to narrow it down to 5 products and to my un-hardware-savvy eyes, all looked very similar. One had a 15” screen but only 8GB RAM and 2000 MHz. The next was $500 more but had 2.5 GHz and a retina screen. It took me two days to learn what everything meant, and another day to think about what it meant to me, and how much each thing was worth. The computer is great, but buying it cost a fair amount of resources on top of the actual dollar amount.

I recently did a literature review as part of my PhD studies and I found that these difficulties around making decisions and managing information to make good decisions is particularly difficult when it comes to health and disability. I found that it’s important for service providers to clearly articulate their service offerings, and the outcomes to which these services lead. It’s also important that decisions are not made in isolation, and that appropriate supported decision-making is available for those people who need it.

I also found recommendations about the best ways to construct an accessible information economy that might support the NDIS marketplace as well as ILC participants. Information needs to be public, easy to find, and presented in diverse formats to make it accessible to as many people as possible. It needs to be trustworthy, from peers and professionals. It should have standardised quality measures that consumers can use to compare options. It needs to contain capacity-building and education about how to use the system. Most importantly, it needs to be co-designed with all the stakeholders who will be using it (check out the blog I wrote last week about co-design!).

How can you start doing these things? Well, obviously at Clickability we think collecting public feedback is pretty important! But I want to give you another example as well to get you thinking.

As I wrote a few weeks ago, we’ve found at Clickability that one of the things consumers value is clear change outcomes from using a service. I know from working in mental health that it can be REALLY hard to articulate outcomes and work towards them without compromising your workers’ ability to be flexible around consumers’ changing needs. I’ve also heard time and time again in workshops we run with consumers about how to give feedback that it’s really important that their expectations are set and managed around what they should expect. Uncertainty is uncomfortable.

So my suggestion? Start thinking not only about what services you offer (aka, which NDIS clusters you’ve registered to deliver), and instead start thinking about what kinds of outcomes you expect to be able to offer consumers as a result of delivering those services. That way you’ll give your consumers peace of mind about what they’re purchasing, and what success looks like for both of you.

Aviva Beecher Kelk is co-founder and co-director of Clickability. She’s really interested in the interaction between economic and social issues. She’s been told on more than one occasion that she thinks too much.