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01 Jun

Choice, Control and Self Determination in the age of the NDIS

Finally, the time has almost come for people with spinal cord injury (SCI) to take control of their lives and their funding in Queensland. The NDIS may mark the best opportunity we have had in recent history, for people with SCI to be able to access the best and most suitable supports for ourselves and our families. For many years our funding and livelihoods have been under the control of one big organisation, who for too long have taken large percentages of our funding for ‘administration and management fees’ and left us only enough for basic daily care. Sometimes, these fees are for supports and services that we have not even received, and will never see. Instead of using this funding for the benefit of their clients, they use it instead to build themselves into a corporate empire, to try and monopolise disability and especially spinal injury support services in this industry. They call themselves a nonprofit and come across as a caring, charitable organisation that wants to help, but in all honesty, they are just here for the money.

This organisation is run mostly by business people, and most of them are able-bodied; they have no understanding of what their clients need, which wouldn’t be so bad if they were willing to listen to those clients. Sadly, complaints and feedback seem to go nowhere, and clients are kept in the dark about their funding and their options. Those executives who do have a spinal cord injury mostly occupy board positions and don’t appear to have much involvement in the day to day running of service delivery, which is where the perspective of people with SCI is desperately needed. This organisation has been using their significant admin fees, which they receive for managing peoples’ funding packages, to invest in property all over Queensland. As the scheme rolls out across the state and more people get access to choice of provider in more areas, this organisation has positioned themselves to have a presence there already, and to access the new market of people with SCI who can afford supports and daily care for the first time.

This organisation goes out of its way to employ someone to cover every aspect of health, public relations, government and services, to become a ‘one-stop-shop’ for service delivery. The money they use to do this comes out of the funding packages of people with SCI and other disabilities, clients of the organisation, and goes toward their monopolisation of spinal injury supports. Their efforts to push out competition at every single aspect of service delivery has resulted in a very distinct lack of choice and information for people with SCI – so many are discharged from the spinal injuries unit with the belief that Queensland only has one service provider to choose from! They are so in control of the information that goes through the PA Hospital Spinal Injuries Unit, the only spinal unit in Queensland, that they effectively have control of any patient who comes through rehabilitation there. They try to recruit every patient as a client and yet they lack the staff to provide the services they promise to everybody with SCI across Queensland.

I know there are many clients, people with SCI and their loved ones, who are unhappy with the service they get from this organisation. Instead of regular support workers, sometimes a client will get agency workers from outside organisations who show up for single shifts, and it happens consistently. This causes an extra cost; if the service provider lacks their own staff and has to employ agency staff, the hourly wage is higher, and the cost for the shift is higher. This cost comes out of your funding support package, and yet clients are often not told this. They think it’s the same rate and the responsibility of the service provider to provide staff, but this isn’t the case; if the service provider lacks staff and has to employ from outside their payroll, they make you pay for the shortfall, and you often won’t even know.

I think it’s time to put a stop to this. We’ve been taken for a ride for a long time now, as people with SCI and our families too, and finally the NDIS has arrived in Queensland to hopefully put an end to this lack of choice. I know a lot of people are worried about the future, and scared that you won’t be able to handle the responsibility that the NDIS brings. It is intimidating to go from nothing to total freedom of choice, but I guarantee that getting access to an NDIS support package will be the best thing to happen to you and your family. I know sometimes we can get comfortable in one place; even with lack of service, or bad service, it can be easier to stay and deal with it than to make a big shift to a new organisation or self-management. But when you make that change, you’ll see how easy life and funding management can be if you have a decent support network, and how happy you will be.

There are many, many other service providers out there, with different support services, staff, and products. It can be very difficult to identify your own needs if you’ve spent a long time being told they don’t matter, but if you can overcome that challenge, and as long as you let your planner and the NDIS know, they can try to make it happen. You will have the control over the support, over the provider. If you self-manage, you’ll be in control of your own money and you’ll know where it’s going. With the technology available, we can be able to access anything – any service provider out there, any care staff, whether it’s the wheelchair, a support worker, a physio or an OT or any health professional you’ll need – we can connect with them, as long as we know they’re out there. For those who are from rural areas this is especially challenging – if people in the city are struggling to have choice over their service providers, it’s even harder in the countryside with even fewer of those service providers there. But you don’t necessarily need them to be in your area, for them to manage your funding, or to help you find supports. For those who struggle with self management, I know some of you will have family who can help you to manage your funding – there is plenty of room for representatives and advocates in the scheme. You can talk to someone you know and trust, and who sees your daily life, to help negotiate for your funded supports.

For those who self-manage all or most of your funding, you have almost no overhead percentage costs – it’s just you, dealing directly with the service or the support and deciding which you’d like to purchase. Some may opt for an organisation to assist with plan management but the percentage and fees taken from your funding package will still be far, far smaller than the massive chunks of funding that a lot of providers are taking now. Managing it yourself instead of giving that funding to a big organisation will mean you have more to spend on yourself, your supports, and your life.

I’ve been saddened to see the low signup in the early roll-out areas – only 5000 people with disability across the regions of Townsville, Mackay and Toowoomba have signed up to the NDIS. This is a low turnout but it’s good in one way; at least our Queensland government has even been able to move launch dates forward for Bundaberg, Rockhampton and Ipswich, to get even more people earlier access to the scheme. I’d like to make it clear, for people with SCI who are locked into block funding; you have been told for a long time that you can’t take your funding individually, and have the choice you deserve. Well, that is not true. You are eligible to apply for the NDIS if it has rolled out in your area; you can be free from the restrictions of block funding and have the flexibility to spend your funding how you need, and to achieve what you want to achieve in your life. If you live in a roll-out area and haven’t been told by your existing service provider that you’re able to change over to the NDIS, well now you know! The NDIS can make that change for you. If you don’t live in a roll-out area, it’s a good idea to start making your plans now, and learning about the NDIS. There are a lot of preparation workshops being run by different organisations – the NDIS website, Department of Disability services and the Community Resource Unit are just some of the places you can find a calendar of workshops and more information about the scheme. You can start to talk to planners and get your plan started up to 6 months before the NDIS comes into your area – that way when it rolls out near you, you’ll be ready to go. You can meet access requirements for the roll-out up to 6 months before it hits your area, so that you can begin your registration early too.

I’ve been wanting to say this for a long time, to bring awareness to everyone with SCI in QLD about the way we have been taken for a ride, what we have had taken away and how our rights and choice have been restricted by one organisation for so long. As I myself would know; I was with them from the day the QLD government started to provide funding packages for patients with SCI, to the time I changed service providers 9 years later. I couldn’t be happier, and I couldn’t be doing the work I do and living the life I live now if I hadn’t made that move to another provider. Today I am able to help people with SCI and their loved ones because I have the flexibility and the freedom to do so, to give them the information and the confidence they need to live their lives to the fullest.

If you need any help, with NDIS readiness, finding information and resources, peer support – whatever you need, please get in touch at and we’ll get back to you as soon as we’re able.

I will post more about this topic on the coming week – please watch this page for more about the NDIS and about the organisation I spoke about above that has been dominating SCI services in Queensland, so that you can be aware of how they use your funding for their own good.

~ Malakai Tava