I interviewed Louise to understand her challenges and how she became a self managed NDIS participant:
Tell me about your life right now. What are you most proud of?
"I feel proud of myself for maintaining a profession, as a radiographer, which has got me to a good place financially. This will allow my partner and I to have choices in life."
What does your typical day look like?
"When I go to work, 7 days a fortnight. I put a lot of energy physical and mental, into a demanding health service. Where I perform scans on patients that we have to fit through a 78cm diameter scanner. On my days off, my home is my retreat, where I rest. I like to spend time with parents and friends also."
Who do you currently use for Physio, health and wellbeing, exercise and achieving your fitness goals?
"Currently I only do what I am self-motivated to do, which is very little, currently studio Physio Pilates once a week."
What do you like to do for exercise?
"Swimming, tennis, cycle, Pilates."
What’s missing or what would you like to see improved?
"I genuinely lack desire and motivation to exercise."
What’s not working?
"My lack of exercise has a flow on to my mental health."
What’s the biggest pain for you around finding ways to exercise, stay healthy and achieve your fitness goals?
"Motivation. Caring enough about doing any. I know that exercise boosts my mood and improves my relationships."
What does your health and fitness problem cost you in terms of lost time, money or aggravation?
"Not exercising effects my quality of life. In terms of mood and being a good person to live with."
Tell me more about your story and how you came to be a self funded NDIS participant:
"In my early twenties, I was working full-time as a radiographer. At the time, I was socialising a lot. I was playing social tennis and netball. For exercise, I was lap swimming and often walked to work 1.5km each direction, going to and from the hospital where I was working as a radiographer.
My accident in Italy was march 1996, age 22. After 6 years of surgery, R and L legs, left arm, splenectomy, in 2002 I opted for an elective right below knee amputation due to recurrent infections. Public hospital based Physio rehab extended out after infection complications.
When I turned 30 in July 2003, I did a tandem sky jump over Redcliffe, no prosthetic, and they kindly piggy backed me to the plane.
When the rehab doctor was happy with my ability to mobilise on a prosthetic, I was referred on to a private prosthetist in Brisbane. At first, I funded my prosthetic, due to receiving compensation. I later swapped to a state based funding model, called QLD Amputee Limb Service, (QALS). There was funding for only one limb, for everyday use. Supply of silicone accessories was limited, due to lack of funding. I was invited to participate in the NDIS in 2018, receiving a letter from QALS, (Queensland Amputee Limb Service).
QALS stopped funding under 65 year olds and funding moved to the NDIS. For those over 65 years of age QALS funding remained.
I chose an NDIA agency convenient to me. They assigned a Local Area Coordinator (LAC) to me.
My GP had to complete an assessment to confirm I was long term disabled.
To show the extent of my injuries and prove percentage disability, I submitted an overwhelming amount of paperwork. There were medico legal reports from my accident. I had learned to do a lot of documentation and legal letters, during my medico legal case for compensation for my accident in Italy. I had all my files which I submitted from the medico-legal case, proving my diagnosis, including 85% disability in my hand.
Once it was confirmed that I was bona fide disabled person the progression was quick.
My first plan was approved in December 2018, for one year.
The first plan, approved in 2018, did not allow for enough funding to cover all my prosthetic needs, which they re-evaluated and adjusted. No Physio was funded initially, a limb assessment only.
The first plan allowed me to have a better quality prosthetic foot, which allows adjustment of the heel height. Also a second carbon fibre limb for exercise and water activity. I requested a water prosthesis as one of my goals was swimming. I received 2 fully funded prosthetic limbs. Whenever my prosthesis breaks I have funding to replace. The feet last approximately 2 years but the sockets last a lot longer.
I learnt more after my first plan, including advice from my prosthetist about what other amputees were claiming, as initially I didn’t claim for my Physio rehab. I was nervous initially and didn’t request I concentrated on the prosthetics.
I was questioned about my car as I was driving an automatic car which wasn’t modified. I was told I had to have driving lessons, an occupational therapist had to assess my driving, I had to change my driving licence and I also requested funding for a modified car and my car was modified, by a person who has a qualification to perform the labour, which was fully funded.
The new funding model provided more silicone liners, which is much better for skin health.
When I interviewed for my second official plan, when my plan was due for renewal, I had more awareness and I went for a face to face assessment with my Local Area Coordinator, (LAC) who had a background and health, was a lawyer and worked for an agency which administers for the NDIS, based in Canberra.
I advocated for myself and informed them I was only currently receiving limbs and I requested Physio and Psychology, as I explained how it was improving my quality of life and I was already paying for these services myself.
After the meeting and assessment the LAC documented and submitted my request to the NDIA and it took a couple of days to hear back.
I was able to explain how much Physio guided pilates helps maintain my strength, in a gentle and supervised way. Allowing me to have exercise practice that is good for my body and mental health. As a result, I was able to gain funding for Physio Pilates.
I have an assessment each time when my plan is due for renewal and a LAC, (Local Area Coordinator) goes through it with me via email and then a meeting is organised."
Which services are currently covered in your plan?
"My current plan covers my Physio Pilates sessions once a week, prosthetist and psychology appointments.
I pay for my appointments, submit the receipt and receive 100% back.
My current plan is for 2 years.
I have money sitting in my plan approved to do a bathroom modification of grab rails, 100% covered, which I haven’t used as I thought I was going to move.
If a new service is required, for example, Occupational Therapy, I request the LAC to confirm funding and it is requested to the NDIS agency. I haven’t met my current LAC as I don’t need to contact them unless I want to progress add a new service.
For example if I needed an OT to look at my bathroom I would email my LAC and I would ask them to check whether it is OK to make an appointment with them and the LAC checks with the NDIS they are happy to fund it, and once approved I would organise the service."
Is there anything you would like to see covered that isn’t currently covered, which you feel would help you achieve your goals, now or in the future?
"I am thinking of applying for wheel chair hire to be funded for when I have a pressure area on my stump and I am unable to wear my prosthesis. I currently pay to hire a wheel chair, when needed.
I know that many amputees request and receive funding for a cleaner and gardener, but I have never requested. Down the track in 5, 10 or 15 years I may need need to apply for funding for cleaning, gardening and mowing, as I anticipate they will become too hard to manage as I get older.
I also anticipate I will need bathroom modifications to assist me to use my home safely and independently, including rails, which should be 100% funded.
I have heard of amputees that aren’t employed and request funding for carers to take them to appointments and have a different amount of funding approved. Also, there a prosthetics with computerized joints that are more cost than my below- knee prosthetic.
In general the NDIS don’t fund exercise or a swimming lesson, more so appointments with health practitioners that have a provider number. And help you improve your function."
Is there anything you would like to add which may help someone at the beginning of the process who is feeling overwhelmed or too daunted to make a start?
"After my trauma and 6 years of medico legal struggles, with a lawyer in Rome, I had to become really good at writing many letters, pushing, saying my truth about what I was going through and requesting compensation for it. It became my ‘career’ and I worked as much as I could manage as a radiographer, with the support of a psychologist, for my diagnosed mild depression.
My GP requested 10 EPC, medicare funded psychology sessions to help me to manage the process.
This struggle helped me to build resilience and helped me to advocate for myself with applying for and working through the process of becoming an NDIS participant.
With any mild depression I imagine many people would think, “What’s the point!”
It’s a rollercoaster and I always sought support and help outside of my family. I feel grateful for my government job and support and being able to afford a psychologist."
Do you feel it was worth the effort to become an NDIS Participant?
"I believe my efforts were definitely worthwhile and have helped me to be able to keep doing the things that others take for granted. Any small tasks getting outside the house and trying anything new require breaking down and planning so there are manageable small steps and I feel safe, comfortable and confident.
You need to believe that you can achieve your goal and improve your life, which can be as simple as being able to leave your home.
Initially getting to the swimming pool and just having a look was a goal broken down into step one. I just needed to get out the house and into the pool area to give me confidence to plan the next stage.
When I first started Physio Pilates I met with Emma and we chatted and she showed me the space and the equipment. I needed this step to feel confident and see myself there, to plan the next step.
I’ve been attending Physio Pilates for 13 years, with the same Physio and I feel safe, comfortable and confident. If I was to change to another studio and Physio it would be like starting again, as we have a system and there are no barriers, it’s easy for me to attend and I know it’s an activity which helps me that is simple and stress free to do.
We are so lucky to have the NDIS, I am so grateful to have the support."
How would you recommend someone start the process to become an NDIS participant?
"See your GP initially and request your 10 EPC sessions with a psychologist and start the process of applying to be an NDIS participant. Your GP needs to to confirm you are long term disabled.
Use the 10 sessions to support and coach you into believing that having a goal will improve your life.
Your goal may be as simple as leaving the house, going to a pool. List the barriers and break then down into small achievable steps to overcome the barriers.
Start by simply looking at the space and talking to people. Think about where you would change and how you would manage, imagining yourself in the space."
What activities do your currently enjoy and what future goals do you have?
"Currently, I enjoy caravanning in National Parks and the beach side. I like to do bush walks, and tend to pick walks around 4-5 km, but not in the summertime, otherwise I can develop a pressure area. I also enjoy doing pool laps in a 50m pool using my swimming prosthetic.
With age, and after doing my occupation, my shoulders have become another area to try and build strength. When I tried doing a swim squad, the intensity gave me bursitis. This has settled down, and I am working towards being able to do a 1km swim again, either in the pool or at the beach in an organised event."
Thank you to Louise for taking the time to chat to me and answer my questions to provide a greater understanding of the process of applying for and securing funding as a self managed NDIS participant.
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