For more than two years I have been fortunate to receive funding as a participant of the National Disability Insurance Scheme. As I recently said in The Age, having lived with multiple sclerosis for 20 years I have often fallen between the gaps of disability support services; you are either in the world of hospital and rehab, or you do everything you can to get better and are too 'well' to qualify.
The services funded by NDIS, including neuro-physiotherapy, have enabled me to sustain employment and pursue a new passion in writing.
But in meeting others living with disabilities and chronic illnesses I've become despondent. I've heard stories of the difficulties in gaining employment but also the absolute fear and apprehension about disclosing new diagnoses or existing conditions to employers.
These stories have made me reflect on the NDIS.
I'm proud of the initiative and the motivation for this scheme, but on hearing these experiences I've begun to wonder -- what's the point? I don't ask this question to encourage cuts in funding. Rather, I pose it to highlight that the NDIS cannot have an impact in isolation.
We are inundated with stories highlighting the epidemic of welfare dependency. Of inter-generational reliance. Of the never-ending cycle.
Such stories assume that everyone living on welfare wants to be receiving this support. For many it is an absolutely necessary safety net. But for others, they want to be working and contributing to the community.
For those fortunate enough to be receiving NDIS funding, the services available are making a difference. In some cases it will make working possible. But what is the point if job applications keep getting rejected? If workplaces have a culture whereby employees are fearful of discussing their conditions, or are apprehensive about negotiating more accommodating and flexible work arrangements?
This African proverb is a timely reminder: It takes a village to raise a child.
The NDIS cannot work in isolation. There needs to be a cultural shift. A village mentality. A sense of social responsibility. There needs to be a desire to embrace difference and provide support and opportunities for those living with disabilities and chronic illness.
Disability and chronic illness is indiscriminate. Twenty years ago I was a healthy 22-year-old, having just completed university and embarking on my career when multiple sclerosis forced its way into my life.
I could have easily been your daughter, your sister or friend.
It does take a village to raise a child. And we can all have an impact. We can ensure that government funding of the NDIS, your taxes, have maximum affect by challenging existing work practices and creating a culture that embraces diversity.