Gathering rich personal stories online to inform the Australian National Disability Insurance Scheme
In 2013 the Australian government introduced legislation to create a national disability scheme. The new system was the single biggest change in Australia’s disability support arrangements for decades. It created a new funding source via a national levy to dramatically increase the budget for disability support and it turned the business model for the distribution of those funds on its head by bypassing the support agencies and handing the money directly to the recipients of their services to create free market.
What the project needed…
There were two principle objectives for the online community engagement process.
- The first task was to seek stakeholder feedback on very specific technical questions regarding the framing of the legislation and policy protocols. For example, “How should the system best serve people from a non-English speaking background?”, and, “What skills and personal characteristics are required of a good carer?”.
- The second task was to gather stories from people living with a disability and their carers. The government sought responses to the question “What is it like for you living in Australia today with our current disability support arrangements?”
What we implemented…
A multi-page EngagementHQ site was used to provide the online solution for the community engagement program. More specifically:
- The moderated forums were used to provide spaces for stakeholders to discuss technical questions regarding legislative and policy formulation, and
- The guestbook was used to gather personal stories.
Both the forums and guestbook were supported by a range of hosted media including documentation, FAQs, video and images.
Unsurprisingly, there was a great deal of interest in this project because of the number of people affected, and the emotional and political resonance of the issues.
The most profound engagement outcome was the collection of stories gathered through the site. Some 300 people shared their personal experiences. All were honest and affecting. And all, in a small way, helped to drive the policy debate that eventually lead to the introduction of the new Disability Care legislation in mid 2013.
Here is just one of those stories, reproduced in part…
I Wish My Son Had Cancer….
I can almost hear the gasps and you all shaking your heads as you read this but I don’t care. It is true…I wish he did.
For nearly 17 years he has been through almost every type of test, scan and has had so many procedures and surgeries that I gave up keeping count long ago. Trying to keep him healthy has been a constant and a sometimes impossible goal. A good year is usually followed by a disastrous one and sometimes they have all blended together into a swirling blur. I try to keep his brothers and their interests a priority but sometimes they’re not. As for me and my husband….that is also something that has altered and bent and is somewhat more of a habit than anything else.
We get very little respite and there are definitely no nurses or support staff to coordinate his care and our lives.
Most of what we know we had to find ourselves and on a bad day it is all too hard. And he will never be cured….no chance. Oh, and would you believe that every couple years we have to fill out a mountain of paperwork and go to see all his doctors to prove that he is still disabled!
So yes I am angry, frustrated and upset because what does he have to do to be heard? How much more do you want him to go through? How many more times does he need to lose control of his bowels in front of his classmates, friends, girls and strangers before someone says enough! But he doesn’t complain just chooses to stay at home and watch tv in his room instead of going out.
And we all wait with him while someone, somewhere decides that he really isn’t as important. He doesn’t complain, he can’t be fixed so he can wait a bit longer.
So think about it and don’t condemn me for wishing that my son had cancer…..
What we all learned…
- The NDIS engagement process reinforced for us, if we needed reminding, that people – the general public – have profoundly important stories to tell, and that they are more than willing to share those online if given the chance.
- The second lesson for us was to be reminded of the everlasting truth that facts and figures may change minds, but stories and personal connection changes hearts. Heart changes are more capable of driving more profound policy change more quickly than mind changes.
What we would recommend for the future…
When collecting deeply personal and emotionally rich stories it is critical to have a number of systems in place:
- Stories must be allowed to go “live” in real time and moderated after-the-fact to properly respect the effort and vulnerability of the participants.
- Moderation must be done manually using experienced moderators who take the time to read each story from beginning to end.
- Moderation must be done quickly to ensure other stories are not disrespected either directly or by inference due to undermining of the space.
- Follow up processes need to be agreed upon prior to beginning the consultation process in the event that it becomes evident individual participants require personal support.
- Stories need to respected as discrete entities and NOT fodder for debate among other participants.
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