Opinion 29 May 2017

Exciting and challenging times…

Over the past 2 ½ years I have spoken with thousands of people with disability, their families and carers, advocates and support workers sharing information, knowledge and experience about all things NDIS. These discussions have highlighted issues, anxieties, problems and frustrations but also options, possibilities, developments and opportunities for the future. I have loved my role as Community Educator for the Every Australian Counts campaign; it is something I feel very proud and privileged to have been a part of and these are exciting and challenging times.

It shouldn’t be a matter of luck.

I’m kind of familiar with exciting and challenging times, and I also kind of have a personal interest in doing what I can to help make the NDIS the best it can be; 30 years ago on my 18th birthday I had a rather catastrophic brain injury. But I am one of the lucky ones, and through ongoing years of hard work re-learning how to do absolutely everything, I have a great life now; I can make choices and I have control over where my life takes me, well as much as anyone does I guess. Sure I have a few more issues and more things to deal with than others, but shit, that’s life. I also feel that 30 years as a wheelchair user has given me a pretty interesting perspective and point of view. And I also feel fortunate that I’ve been able to go to university, have had great jobs in open employment, travelled the world and been able to make choices about where I live. But this shouldn’t be a matter of luck; if a person is born with disability, or if they acquire it, the system should be there to enable them to live their life, with the supports they need and want, the way they choose to. Not the way they are told they have to, or the way they have to scrape together, or the way they have to put up with and get used to.

We’re problem solvers.

People with disability, their families and carers are the best problem solvers I know. We need to be, because generally we just have to be. We’re just used to not being fully included, to things going wrong and shit happening, to not being able to do what we want to the way we want to, or having to have a back-up plan because something isn’t available, accessible, inclusive or just because we happen to do things differently because of who we are. For a long time that was just generally the way it was, but gradually things, society and community and attitudes and legislation, have been changing for the better. People with disability are starting to be treated with the dignity and respect that their innate human rights entail. Inclusion and participation, and this will always be ongoing and developing. The person-centred approach of the NDIS will accelerate this as people are increasingly supported to live their lives as they choose too. Let’s keep directing that problem-solving strength and ingenuity towards ensuring the NDIS delivers on its vision and potential.

A work in progress

The NDIS is a work in progress and it is going to take time to fully develop and get right. Everyone involved in the disability sector, from individuals and families to workers, providers, organisations and governments are having to transition to and get familiar with a new model of support delivery and all that that entails. We all need to embrace change and be inclusive and supportive, not just looking out for vested self-interests, especially governments and large organisations who can be slow to adapt and innovate. There will be mistakes made and we will all get beyond frustrated and shitty at times with what’s happening. That’s how we learn and build best practice to improve things. And we are all in this together; living, learning, sharing and working towards making it the best it can be, for everyone involved.

There are many issues that are being addressed and so many more that need to be. There are still a lot of policies and procedures that need to be further developed and improved. There are too many grey areas; we desperately need to clarify how the NDIS will successfully integrate with other mainstream government and community support services, rather than be expected to replace them. This can all feel like it’s taking too much time, but we now have the chance, the opportunity, the legislation and the processes to change things when they do go wrong and to try different approaches and innovations that work for the individual rather than the system. This is no longer a one size fits all sector.

We also have to make sure that politicians and bureaucrats don’t get overwhelmed and side-tracked by the volume of systemic change and go into default mode. No government scheme or program will ever be everything for everyone involved, but the NDIS is going to be a vast improvement over the failings of the previous system and it will deliver long term improved outcomes for generations to come, we have to keep that focus.

Let’s stay true to the vision

Amongst all this change and hard work we have to stay true to the vision and principles behind the NDIS and realise and release the vast potential and long-term benefits that it holds to improve people’s lives. And also the flow on benefits for so many areas of our society and communities. We now have that chance, let’s make it so.

Yes I know that I get excited and grandiose about the NDIS and that I often have big picture rosy ideals about this scheme, but I also know all too well the lived experience of day to day shitty gritty reality with disability. I want to see an NDIS in the future that lets people choose for themselves what they want to focus on in their lives, to be involved in their communities and society how they want to.

Moving on but always a supporter

I am now moving on from my role at Every Australian Counts for personal reasons; my fiancé and I have reached peak-Sydney and have had enough. We are choosing to move to Adelaide for a better quality of life, but I will still be working in the sector and be genuinely passionate about all things NDIS. I’m going to keep fighting the good fight, just going to be doing it elsewhere.

These are exciting and challenging times…

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