A woman living in the Ballarat region with a rare leg amputation has spoken out about her two year battle to secure funding for a prosthetic leg through the National Disability Insurance Scheme.
It has been one of the worst processes I have gone through in my life.Meg Smith*, amputee
Meg Smith*, not her real name, said her experience 'fighting' to secure funding for her leg with the NDIS had been a 'nightmare process' and one of the worst experiences of her life.
"I am a really strong and confident person but it just about broke me," she said.
"Having chemotherapy and the amputation I knew what was going to happen. With NDIS I never knew because I was waiting, chasing and battling. It has been one of the worst processes I have gone through in my life."
Ms Smith, an amputee for more than 30 years, is not the only person who has struggled with or lost faith in the NDIS.
National amputee support organisation Limbs 4 Life and the Ballarat Amputee Group said the NDIS process had worked well for many people with a disability, but there were too many amputees who were falling through the cracks, waiting long periods of time and battling to justify funding for complex prosthetics to staff with 'inadequate' knowledge.
In response, a National Disability Insurance Agency spokesperson told The Courier the NDIA understood the importance of assistive technology and funded equipment that was reasonable and necessary to meet an individual's needs.
According to Limbs 4 Life, the number of amputees needing support in Australia is growing.
There is one amputation performed every hour in Australia, which equates to 24 people per day and almost 8500 per year, due to diabetes, cancer, vascular disease, infection and traumatic accidents.
Data shows Australia's amputation rate has increased 30 per cent in the past decade and Australia has the highest rate of diabetes-related amputation in the developed world.
AN AMPUTEE'S BATTLE TO FUND HER LEG
Ms Smith secured funding earlier this year for a prosthetic leg after a two year long 'battle' with the NDIS.
As a long-time amputee, this was not her first prosthetic leg, but the first time she had been through the process of securing funding in Australia since moving to Ballarat.
The model is about money. That is where it is wrong from a medical point of view. This isn't about money. This is about people's lives.Meg Smith*, amputee
Ms Smith said she began the registration process with NDIS in 2017 when she knew she would soon have to purchase a new prosthetic leg. Her previous leg was becoming worn out, causing pain and some falls.
She said it took eight months to have her NDIS plan approved. Her first funded prosthetic leg trial began in May 2018, but the process was complicated by the difficulty of finding a specialist who had the knowledge and experience to deal with her rare amputation.
Ms Smith said she had to change providers part way through the trial to find a more suitable clinician and was supported by NDIS to make the move. But when she did find an appropriate clinician to return to the trial she was told NDIS could not transfer her plan and she instead had to restart the process from the beginning.
"I fought with them for eight months to pick up the trial where I left off with the new provider. They would not do it. In the end I had to go through the same process again and lost eight months," Ms Smith said.
Ms Smith said the next 'battle' was to justify the funding requested for the prosthetic leg with the componentry the clinician had recommended.
"I must have spent every day for a month asking about the funding to be told I was still in the system. You are in a system in a call centre and it is incredibly frustrating because a prosthetic leg is a very personal thing," she said.
"The model is about money. That is where it is wrong from a medical point of view. This isn't about money. This is about people's lives.
"You are begging and grovelling to justify something you have either always had before or there is something new that has come out that is going to make your life better.
"It was the biggest fight in the end to get the foot I wanted, they couldn't understand the cheaper option didn't work for me.
"The process made me feel so much stress. I have been in tears when I go into my local area coordinator. They make it so hard. The say no first. I think this is where the NDIS needs to change."
In a statement, an NDIA spokesperson said 90 per cent of participants rated their overall experience with the NDIS planning process as either 'very good' or 'good'.
"For participants who have funding in their NDIS plan to purchase equipment, the NDIA may request expert assessment from a qualified professional - such as an occupational therapist - to ensure it is the most appropriate type for the individual, is fit for purpose, and will assist them to achieve their goals," the spokesperson said.
"The NDIA has worked with Disability Advocacy Network Alliance, and other stakeholders, to develop training resources for NDIA staff to improve awareness of disability.
"NDIS planners are also supported by advice from technical experts in various specialist areas, including prosthetics and orthotics."
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Limbs 4 Life made a submission to the NDIS last year recommending changes that would improve the process for amputees.
The organisation believes the scheme could provide amputees with better opportunities to lead an ordinary life, but the system as it currently stands needs modification to best meet the individualised goals of people with disabilities.
The submission recommended the adoption and installation of streamlined processes across partner organisations so everyone has a similar experience, to simplify the process to reduce administrative burden on participants, and improve participant access to local area coordinators to reduce fear and confusion.
It also recommends a 30-day maximum process for any approval, upskilling for planners and local area coordinators to ensure a greater understanding of the basic needs for people living with limb loss, and to ensure emergency funding is available for participants to access immediately without general funding approval requirements.
Limbs 4 Life chief executive Melissa Noonan said the NDIS process had worked for many people, while for others it had been a long, slow journey.
"We have had cases where we have advocated for people for 12 months to get their plans across the line but for others everything has gone through simply," she said.
"It is not nationally consistent yet. It is not a one answer fits all, it has to go back to the individuals needs and what their goals are."
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Ballarat Amputee Group president John McGregor has heard stories from a number of amputees in Ballarat who have struggled with the NDIS process.
"Everything seems to take time or submissions are under appreciated. They are knocked back on things that seem straight forward," he said.
"For people who are trying to re-establish themselves in the workforce after an amputation it can be a hard road because things slow down. The quicker you get back to work would be the ideal.
"Mostly with amputees there is a real passion to get back to normality, back to work, to community, to family. If you are waiting on funding for prosthetics you aren't going anywhere. That extra stress makes it so much harder."
A Department of Social Services spokesperson told The Courier in a written statement the Australian Government was committed to continually improving the NDIS.
"A review is currently underway into the NDIS legislation to develop a new NDIS Participant Service Guarantee that will cut red tape and wait times for participants," the statement said.
"People with disability and their families, carers and supporters are encouraged as part of this review to have their say on how NDIS processes could be improved and what is important to include in the guarantee."
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"I think they have got the model right for a lot of other people with disabilities, but they have got it wrong for a few," Ms Smith said.
The system isn't meeting the needs for everyone.Meg Smith*, amputee
"I started to feel internalised and almost hiding myself away during this whole process because I wasn't able to walk very well on my old leg, my whole body was breaking down and more people were commenting on how bad I was walking. I was bleeding every day because I was rubbed raw.
"I asked 'are you going to justify the funding for a new leg?' and they said 'have you got a medical certificate to prove that?' And all that is going to is someone working at a desk at a computer. They are not someone who understands amputation. And every amputation is different.
"This is not something that goes away. Every year you have to re-justify it. I have to go through it next year again and review my plan and I am dreading it.
"There are good staff in NDIS who do their best. But the system isn't meeting the needs for everyone."
October 4 to 11 is Amputee Awareness Week, a national week that aims to raise awareness of amputees in the Australia community and reduce stigma.
The Ballarat Amputee Group has worked to raise awareness in Ballarat with a display at the Queen Elizabeth Centre and green lights of the Town Hall clock face. There are about 30 members of the group who come from Ballarat and the surrounding region, as far as Horsham and Nihll.
Ms Smith asked to remain anonymous because she was afraid of jeopardising future NDIS funding.
In a statement, an NDIA spokesperson said any participant with concerns about their plan or included supports are encouraged to contact their Local Area Coordinator, or contact the NDIS on 1800 800 110 or firstname.lastname@example.org.