Transition to NDIS: Response from Dr Lisa Chaffey
I read Barbara Simpson’s blog on transitioning to the NDIS in the December Spire NewsLink with interest. It sounds like she eventually found her way through a difficult system. I would like to share some hints and ideas about navigating this new world from my unique perspective of being both a wheelchair user and an occupational therapist (OT).
I have been a wheelchair user all my life. I was born with a rare disability, lumbar-sacral agenesis, meaning that I was born without any vertebrae below L1. As a result, I have spinal nerve damage, and complete paralysis of my legs and half my torso.
As an OT, I was part of La Trobe University’s team that worked with Flinders University on the Government-commissioned NDIS evaluation. I interviewed many participants in Victoria, and from that I learnt that participants need to be clear on what they want from the scheme and be able to communicate that. I set up an OT private practice last year as an NDIS and TAC provider. Now that I am providing OT in this scheme, I see that my clients’ experiences have similarities to the evaluation participants, particularly in the importance of communicating and being clear about their needs.
Which brings me to some handy hints to help you and the NDIS get off to a good start:
- Being prepared for your NDIS planning meeting is the key to having your needs met. There are a number of preparation services and workshops around, including one by Spire. These services can help you generate goals for different life areas, such as community access, tasks around the home, mobility, and physical and mental well-being.
- As Barbara said in her blog, insist on a face-to-face planning meeting, preferably in your own home. Having the planner come to you means that they see how you manage in your own home. Remember though, they aren’t there to assess you; their job is to find out your goals. But seeing you in your own home gives the planner a better picture of who you are.
- So far in NDIS’ evolution, there has been high staff turnover. Be prepared to have a few different planners over time. To minimise your needs falling by the wayside, always ask for verbal assurances and promises to be sent as emails so there is something in writing to show the new planner.
As much as there are difficulties and teething problems with the NDIS, this scheme has opened up new possibilities for people with spinal cord injury:
- A planning meeting is an opportunity to request allied health assessments, such as OT and physio. An OT can make sure you have the right equipment and technique to manage activities you want or need to do, such as cooking or dressing. And a physio and podiatrist could stop a small problem (like a sore shoulder) becoming a big problem later down the track.
- For the first time, many people with a spinal cord injury have available funding for recreational equipment and support. If the equipment or support is reasonable and necessary to meet your goals of physical and mental health, or for you to participate in your community, it can be funded by NDIS. Equipment and supports could include a sports wheelchair, someone to help at the gym, or even something as individual as an adapted fishing rod.
As Barbara pointed out in her blog, there are still difficulties when you are living with the NDIS, particularly in regional areas. Here are some final hints for when things aren’t as simple as they could be:
- “The squeaky wheel gets the oil” (sometimes literally!) – If you’re having problems with funding services, get on the phone to your NDIS planner. Don’t be shy to speak up.
- You have the right to a plan review if you are not satisfied with the supports and equipment offered in the first plan.
- If you are still not satisfied, you can take it further. Contact your federal minister or consider bringing a case to the Administrative Appeals Tribunal.
The NDIS is in its infancy, and along with the new opportunities, there will be problems along the way. Be clear with your needs, and communicate these to the NDIS, whether that be via a planning meeting or request for a plan review. As the scheme grows and we provide input, my hope is it adapts to the needs of the people it services.