Disability peer support: share experience and keep your choices

Nobody is talking about this.

Every day, I hear people complaining about the new National Disability Insurance Scheme. And rightly so – we hear stories of long wait times at call centres, of planners with bad attitudes, of aggressive provider behaviour and issues like price gouging.

But there’s this marvellous unintended consequence that has come out of this thing called the NDIS. It’s the power of peer support, and we need to talk about it more.

I work part time for Peer Connect, an organisation funded to create, support and maintain peer support organisations. I won’t say it’s easy – the groups I work to support are made up of 100% disabled people and we’re often sick or unsupported or living in poverty, which makes it hard to make groups sustainable.

It’s been like growing flowers in the desert, but the outcomes have been kind of wonderful.

For the first time, amputees have been able to compare their services and prosthetic limbs with those of other amputees – not just via their state networks, but nationally. Autistic people are talking about their mental health and how to update their diagnoses, sometimes with surprising results. And parents are realising that their children have other options. It’s easier to vision if you’re not living in crisis and what was once your only choice might now involve something more. Like the possibility of being supported in open employment rather than supported employment, or earning enough money to buy or rent an ordinary house on an ordinary street.

It’s something we never imagined. Groups of thousands of people all over Australia getting together to start thinking about what is possible, comparing their support, providers and ways to navigate a new system. The power balance is changing, and the way we communicate and share information is changing with it. Social media has changed the disability landscape and we’re suddenly able to connect with others to find out things we might never had considered before.

It’s going to take a little time for us to stop adhering to the status quo. We’ve been living in crisis for so long that it’s been like crawling through mud and gunfire, so intent on survival that we haven’t been able to glance sideways at our fellow soldiers, let alone think about what lies behind the next summit.

By ourselves, it was impossible. But together we can change our lives.

Sam is a disability activist, consultant and social media assassin.  She spends far too much time working on disability issues and far too little time patting her bulldogs.  To connect with Sam, find her on Facebook.