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Writer's pictureCPSN

Unpacking the Meaning of 'Lived Experience': What It Is and Why It Matters


An adult woman with cerebral palsy is using a laptop at a desk. She is sitting in a wheelchair and wearing a cream sweater.

We use the term ‘lived experience’ a lot at CPSN – because one of the things that we believe separates us from other NDIS providers is the fact that 40% of our office staff have lived experience of cerebral palsy.

 

But what does ‘lived experience’ actually mean?

 

In its broadest sense, ‘lived experience’ refers to people who are directly affected by social, health, public health or other issues, and by the strategies that aim to address those issues. This gives them insights that can inform and improve systems, research, policies, practices, and programs. So when we say lived experience, we mean knowledge based on someone’s perspective, personal identities, and history, beyond their professional or educational experience.

 

In the disability sector, we specifically use the term to refer to either people with a disability, or carers of those with a disability.

 

Why is ‘lived experience’ so important to CPSN?

 

By employing staff with lived experience of cerebral palsy, we’re able to better identify real problems and pain points that our prospective clients experience, and tailor our services accordingly. It’s an important part of what sets CPSN apart from other NDIS providers.

  

By employing people with lived cerebral palsy experience, we’re able to play a small part in improving employment opportunities for people with a disability.

 

Surely most NDIS providers employ people with lived experience?

 

Research released last year by the University of Sydney found some disappointing figures around the employment of people with a disability within the disability services sector.

 

According to this research, USYD’s Centre for Disability Research and Policy found that among Australian disability service organisations:

 

  • 24 percent report they do not employ any people with disability.

  • 50 percent employ at least one person with disability

  • Only 24 percent include at least one person with disability on their board

  • Only 19 percent employ people with disability in management positions

 

Senior author on the paper, Professor Jen Smith-Merry said, “By not employing and promoting people with lived experience of disability, many services are missing out on a range of benefits – these include an increased understanding of clients and services, gains in staff morale, higher staff retention and greater productivity.”

 

So what does this all mean for CPSN?

 

As a disability services provider, we’re committed to employing people with lived experience of cerebral palsy. Individuals with lived experience work all across our organisation – from our board of directors to our customer service team, and everywhere in between.

 

When you get in touch with CPSN – because you want advice, because you want to find out more about our NDIS services, or because you want to participate in our free member services – the chances are you’ll be speaking to someone with lived experience.

 

Because we know that it matters. To you, and to us.

 


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