Disability advocates are raising concerns about the delivery of the NDIS, with a recent report from Flinders University suggesting that a third of participants felt no better off under the scheme, and 20 per cent feel worse off. Critics say that the scheme is very confusing, that decision-making can be inexpert and inconsistent, and that those who aren’t good at self-advocacy are at a disadvantage.
Vicki’s struggle to access the NDIS illustrates this last point in particular. Without her proactive approach, she may have been lost in the system for even longer. Her story is useful both as a warning of the problems new clients may face, and as practical advice on how to address them if they arise.
Being a participant of the NDIS, I thought I would write about my experiences with accessing the scheme, from registration to accessing services. I am totally blind, and have other disability related issues. I commenced the registration process on 1st May 2017, hoping that I wouldn’t have to wait too long to meet with a Planner by the time it rolled out in my area on November 1st.
I was sent the paperwork to be filled out by my local GP or relevant Specialist, and was required to return the paperwork to the NDIA within two weeks, which I did. I did not receive any confirmation to advise whether it had been received or whether I was eligible or not.
When I did not hear back by early August, I phoned the NDIA, and was informed that my paperwork was yet to be processed. I was encouraged to call back in September. I called again in mid-September, and was informed that the NDIA couldn’t give me a time frame for when I would hear about my eligibility. It was suggested I call back in a couple of weeks.
By this stage, I felt particularly frustrated, as I was hearing from others that they were being contacted by the NDIA to register. If they had registered themselves, they received a written response pretty quickly, often within a month.
As the NDIS was getting closer to commencing in my area, I became concerned that I wouldn’t receive assistance in a timely manner, given I commenced the registration process back in May. I therefore contacted BCA’s advocacy team for assistance. BCA emailed the NDIS feedback line, relaying my concerns and issues.
The automated message which BCA received said that the NDIS would attempt to resolve my issue within 21 days. When the 21 days was nearly up, neither BCA nor I had heard back from the NDIA. I therefore got in touch with my local Federal Member of Parliament in mid-October to advocate on my behalf. At this stage, I didn’t even have an NDIS number.
My local Federal MP made contact with the NDIA. Shortly after this, I heard back from both the MP and the NDIA, informing me there had been a glitch with the NDIS computer system, hence the delay in sending a letter regarding my eligibility.
I was then told that I would be contacted by a Planner in the near future. However, the 1st of November had been and gone, and I still hadn’t heard from a Planner. Following further contact from my local MP, I was contacted to inform me that I would be contacted in the first quarter of 2018, but they couldn’t give me a precise date.
I explained that I relied on family to access the community, which made this uncertainty really difficult, to no avail. I asked if I could speak to someone higher up, and was informed I couldn’t, as Management were assisting with making phone calls to participants. I was told that my feedback would go on my record. It seems to me, though, that the feedback wasn’t going anywhere, and unlike other agencies, the NDIA didn’t seem to have a proper complaints process.
Not satisfied with this outcome, I met with the Hon Kevin Andrews, Chair of the Joint Standing Committee on the National Disability Insurance Scheme, an MP in a neighbouring electorate, in late November. After liaising with the Hon Kevin Andrews and his staff, I found out just before Christmas that the NDIA had agreed to contact me in January to arrange a planning meeting, which they did.
I met with a Planner in late January, and my Plan was approved within a week. I didn’t get everything I asked for. I certainly felt I wasn’t approved enough funding in the area of adaptive technology. I felt the Planner didn’t have a great understanding of how much some of the specialist equipment actually costs. For example, the Planner seemed to see scanners as a piece of equipment that anyone would go and buy from Kmart or Harvey Norman.
Despite potentially having to have part of my Plan reviewed, I am now accessing the community. Having said that, accessing services through the NDIS once the Plan has been approved has not been without its challenges. Due to NDIS, some service providers have had longer than usual waiting lists. With other services, delays can still stretch out, as the providers need to enter a lot of information about your Plan before they can commence. Regardless of an individual’s circumstances, these delays can be very difficult, particularly if the services are required urgently.
The difficulties Vicki experienced are worrying, not just because of the harm and frustration she personally suffered. She was well-equipped to speak up on her own behalf, and knew what to do when she realised she wasn’t being heard. But we can’t assume that everyone is in her position.
If people who lack advocacy skills are at risk of being left behind, and if Planners lack understanding of the adaptive technology they’re assessing, these are failures we cannot accept. The NDIS could be a dream come true for people with a disability in Australia. This is why it’s vital that we highlight cases like Vicki’s, because it won’t come true if we give up when we’re half way there.