Zoë Wundenberg | Here's some goals to get the NDIS back on track

Generally, it is a great scheme that supports members of our community that need additional help that can often cost thousands of dollars (or more) over the years. In this sense, it acts as a financial playing-field leveller. Disability is expensive, dear reader.

Very expensive. This support can make a huge difference to a person.

But ... And there's nearly always a "but", isn't there? But ... it's not without its frustrations.

In response to David Tune's NDIS Review in 2019, then LNP NDIS minister, Stuart Robert, acknowledged that many NDIS participants had experienced long wait times, frustrations with overly complex processes, and struggles with understanding their needs.

Some participants have characterised their experience of the NDIS as a disempowering process that has left a "lasting negative [impact] on their wellbeing."

This definitely rings true for my experience with many of the participants I have worked with in recent months. The most common frustration relevant to my work with this client cohort is them not being aware of what supports are available for people with similar condition/s.

If you go through the resources available on the NDIS website, the participant is responsible for identifying the supports that they need.

The NDIS pathway video explicitly states that the first plan is really about the participant setting goals and then identifying what supports they need to achieve those goals.

Perhaps it's not unreasonable to expect the individual participant to know what they need. Maybe the NDIS is just about funding and it should be the responsibility of the participant to know what they need funded.

In an ideal world, sure. OK. Makes sense.

But our world is far from ideal. The reality for many participants is that they lack access to reliable primary healthcare that could otherwise provide guidance here. In regional and rural Australia, a shortage of doctors has led to a high turnover rate, which significantly impacts those of us living with a disability as we often have to "start all over again" with a new GP.

If you have a condition that is uncommon or complex, this can particularly impact your healthcare as you then become the expert in the room regarding your disability, and the doctor no longer feels like a person you can go to for advice or guidance.

This issue goes beyond our GP clinic, though. We also have a shortage of specialists in regional and rural Australia, with many people living in these areas having to rely upon telehealth appointments just to see someone, which is far from ideal.

The government has thrown money at the problem and there are recruitment programs in place to attract doctors to regional areas, but the progress is slow and retention remains a problem.

This means that right now, NDIS participants' access to reliable, continuous primary healthcare is problematic, and their access to specialist care for their condition is often fraught with long wait times and telehealth restrictions of service delivery.

Is it any wonder that they are struggling to recognise what supports they need to help their condition?

The NDIA collects and publicly shares data regarding participant demographics, payments made, provider insights, and outcomes achieved. However, nowhere in the reports was there a list of the most common supports for different conditions nor insight into their efficacy for the participant.

READ MORE ZOE WUNDENBERG:

I know each individual will likely respond to care/therapy options differently, but for many participants, not knowing where to begin, with insecure access to primary healthcare, means they are not achieving the results they could be, and NDIS funds aren't necessarily being spent where they would make the most impact - because they don't know where that is.

Imagine the power of the NDIS if they tracked and reported on data to help participants make decisions and learn from each other's experiences, not just to pat themselves on the back for the money they've spent.

Imagine a portal where you could enter your condition and accessible data appeared regarding others' experiences with your condition/s, success (and failure) stories, and information regarding what has helped them the most?

Imagine creating an NDIS online community that brought people together to help each other.

If it already exists, I couldn't find it.

Change is coming this October. NDIS Minister Bill Shorten - no pressure.