The NDIS is Australia’s first publicly funded national disability insurance scheme. Legislated in 2013, and in full operation since 2020, the NDIS has provided life-changing benefits to many Australians.
However, the NDIS is not without fault or its critics.
Over the past decade and across more than 30 policy submissions, MS Australia has actively advocated on behalf of people living with MS for improvements to the NDIS.
For every positive story of an Australian helped by the NDIS, there are others who have been left behind.
With the Government working to rebuild trust in the NDIS and implementing a review of the NDIS, there are many reasons for optimism.
MS Australia has been actively engaging in the NDIS Review including a campaign calling for six essential reforms to improve the NDIS for the MS community.
Together with our Member Organisations, we called on Australians to support this campaign with a signed letter of support to the NDIS Review Panel co-chairs. We would like to thank the 2,173 people who signed onto this Letter of Support which we have now formally lodged with the NDIS Review.
It is estimated that 1 in 6 Australians* live with a neurological or neuromuscular condition or a neurological disorder. The Neurological Alliance of Australia (NAA), of which MS Australia is a founding member, estimates that around 15 per cent of NDIS participants have a progressive neurological or neuromuscular condition.
National Disability Insurance Agency (NDIA) staff do not have a good understanding of people living with progressive, degenerative, neurological and neuromuscular conditions such as MS. This leads to ineffective planning sessions, inappropriate plans that do not address needs and unnecessary reassessments or plan changes. There is also a lack of understanding of the importance of access to the coordination of supports and assistive technology for people living with MS.
Greater awareness, understanding and education of neurological and neuromuscular conditions are needed to ensure improved support, participant experience and outcomes. MS Australia has developed an MS ‘Snapshot’ in collaboration with the Disability Advocacy Network Australia (DANA) that provides a participant-informed, e-learning disability training package on MS for NDIA staff, but to date there is little evidence this resource is utilised.
NDIA staff also need to improve their understanding of disability and their capacity to appropriately engage with people with disability. Compulsory disability awareness training for all NDIA staff and an increase in staff with lived experience of disability will substantially improve engagement with people with disability. It will also lead to improved application processes, person-centred plans, and reduced appeals and review requests.
MS Australia believes that creating a neurological voice within the advisory and consultative structure of the NDIA will also ensure fairer representation for those living with progressive neurological or neuromuscular conditions, and improve the understanding of the NDIA in relation to these conditions.
*World Health Organisation (2006). Neurological Disorders: Public Health Challenges. Retrieved from: https://www.who.int/publications/i/item/9789241563369
For many people accessing the NDIS is complex, time consuming and overwhelming. People with disability and their families need support to access the Scheme and navigate the various stages of assessment, planning and service access. The current NDIS resources do not provide clear and accessible information on accessing the NDIS and present a version of the NDIS that does not match the lived experience of many applicants.
Currently, the NDIS requires participants to reassess their plan approximately every 12 months. However, for people living with MS, once they are assessed as eligible and receive an approved NDIS plan, the progressive, degenerative nature of MS means that their support needs will not decline over time, so this requirement is unnecessary.
Support coordination provides crucial support for people living with MS in managing their plan and ensures they can access the services and supports they need and manage interactions with providers. Currently, access to support coordination is inconsistent, with many participants having their access removed or reduced over time.
The early stages of MS are an ideal time for access to early invention supports that allow people to continue working, be an active member of their community and slow the progression of their MS. Currently, the early intervention pathway for adults is unclear and not well understood by planners and assessors.
Assistive technology and supported accommodation play a critical role in the lives of people living with MS by facilitating independence and participation in everyday activities. However, people living with MS struggle to get approved for the assistive technology and supported accommodation they need. Access to these supports is not driven by participant choice and control but by the decisions of NDIS planners and delegates.
People living with MS who are not eligible for the NDIS must access assistive technology through a state or territory-based aids and equipment scheme. Many of these schemes are underfunded, inequitable and inconsistent, have long waitlists and provide a limited range of supports. There is a need for a national assistive technology program for people who are not eligible for the NDIS to provide consistent, national access to assistive technology.
Many young people with disability live in aged care because there is nowhere else for them to live. There are still 2,934 people aged under 65 living in residential aged care in Australia, and more resources need to be dedicated to supporting young people with disability to access the accommodation that best suits their needs and personal goals.
MS Nurses are an integral part of the multidisciplinary healthcare team of specialist healthcare professionals providing support, education, advice, and care for people with MS. Access to MS Nurse care brings health benefits for people with MS, including lower disability level, slower self-reported disease progression, less severe symptoms, lower levels of depression and anxiety, and a higher quality of life.
The MS Nurse Care in Australia Report produced by MS Australia, in collaboration with the Menzies Institute for Medical Research and MS Nurses Australasia, found that one-third of Australians living with MS (equivalent to 8,000 people) do not have access to life-changing MS nurse care and have consistently worse health outcomes. If every Australian with MS had access to MS Nurse care, this would result in significant cost savings for MS healthcare in Australia.
The NDIS currently funds some disability-related health supports delivered by a registered nurse. Expanding this to include MS Nurses would significantly reduce the overall costs of supporting participants living with MS.
Australians living with MS aged 65 and over when the NDIS was introduced, and those who develop a disability and/or first access services after turning 65 are ineligible for the NDIS and must either self-fund their care or pursue their disability needs through the aged care system.
Older people living with MS want support to remain independent, live in their homes, have a high quality of life, and remain engaged in their community. Unfortunately, the current aged care system does not cater to the needs of older Australians living with fluctuating or episodic disabilities or health conditions.
Removing the age discrimination for NDIS eligibility will ensure that older people with disability can access the support and services they need from a system specifically designed to address the needs of people with disability.
The Royal Commission into Aged Care Quality and Safety (Royal Commission) found that older people with disability receiving aged care do not have access to services and supports at the same level as those provided to people through the NDIS. The Royal Commission recommended that the new aged care system include equity for people living with a disability (recommendation 72). It is crucial that this recommendation is taken into consideration as Australia’s aged care system undergoes extensive reform in the coming years.
Currently, only 12.6 per cent of the Australian disability population access NDIS services. Most Australians with disability are reliant on programs outside of the NDIS, which are often poorly funded and difficult to access. As a result, many people living with disability are struggling to get the supports and services they need.
As the Australian government reviews and reforms the NDIS, this provides a unique opportunity to engage with state and territory governments to review non-NDIS disability programs with an emphasis on streamlining programs and improving access.
People with disability face an elevated risk of poverty, especially in households where people are reliant on government pensions or allowances such as the Disability Support Pension (DSP) and Job Seeker Payment.
The current rates of both the DSP and Job Seeker Payment are not adequate to meet the increased costs of living with a disability. They are also difficult to access and have a strong focus on compliance supporting individuals to meet their needs.
Kelly Engelhardt, 41, was first diagnosed with multiple sclerosis in July 2001, while studying teaching at university. Her teaching career was cut short as her condition worsened.
Married with two children, Kelly has now been receiving NDIS support for five years after her first application was denied. While enormously grateful for the support, Kelly is frustrated by the NDIS’s lack of understanding about her condition.
“I was out at the shops, and I just burst into tears. And I spoke to my neurologist, and he was like, ‘Are you kidding me? They are asking you for proof that you can’t be cured?’ So it was really deflating. If they (the NDIS) don’t understand about it not being cured, how are they going to understand what help I need.
“We all have different types of MS, within those different types we all have different degrees of disability and you need to understand everybody’s case is completely different for what we need to make our lives better.“
Kelly’s mobility has dramatically declined in the last three years, and she requires the use of a wheelchair when leaving the house. Four months ago it was hard to go to the local shopping centre but she could do it. Now it has become too challenging and the impact on her health too great.
“I’m fatigued all the time, always so tired. It’s the fatigue, the pain…I forget things easily.“
In her most recent NDIS assessment, Kelly was left disappointed and baffled that her request to increase her access to an exercise physiotherapist from one hour a week to two hours a week was knocked back this year.
“I never wanted to stop working, I never wanted to rely on the government to help me with things. I am exceptionally grateful that the NDIS exists, more than I could ever explain, because it helps me. But I need help in some ways that are missing from the NDIS. To give me hope that the decline can slow down, that I can be a better mum and wife for as long as I possibly can.“
Roslyn is 55 years old, living with MS, and currently resides in a retirement village where she has access to carers.
Roslyn was diagnosed with MS when she was 25, on the day of her birthday. She found out after experiencing an MS attack that shut down her body. She was found on the floor by her then-husband and later diagnosed at the hospital.
Roslyn recalls the moment when she realised her MS was not going away and her life would not be the same.
“I was in hospital for a week, and then they took me to the rehab centre for a couple of weeks,” Roslyn said.
“When I left there, I came back home, and I thought that I could go back to my normal self. But when I went to try and make the bed and putting the quilt over the bed exhausted me, and I thought, ‘this doesn’t make sense. I’m only doing a simple task. Why can I not do it?’. I then realised what the MS had actually done to me.”
Before she turned 40, Roslyn was managing her MS well despite having numerous relapses. But then she started having issues with memory and mobility, and her MS continued to progress until she had to stop working soon after.
She applied for the NDIS and was funded for physiotherapy, remedial massage and chiropractor for the past 11 years and has gotten amazing results.
“A good day is when I have energy, I do my exercises, I have my chiro and still have energy when I get home.”
Roslyn credits the therapies for improving her health and well-being and delaying the need for a wheelchair.
However, she has since had her NDIS funding cut for these therapies and now does not receive any support for massage, chiro or physio.
Roslyn believes this is a result of the NDIS failing to understand MS and how vital these therapies are for managing her MS symptoms and getting through the day pain-free.
“I used to get physio and massage twice a week and chiro twice a week. And then they cut my funding back, and it stopped all of that. And now I don’t have very many good days at all,” Roslyn said.
In November Roslyn will lose all her NDIS funding which means no carers, no social activity and no support she needs for her MS. No care at all.
Losing funding for carers will leave her with no one to supervise medications. The carers Roslyn will still have access to will leave at 1pm, and she will receive no care until the following morning. This means she will get dressed for bed and have her curtains closed by 1 pm.
Roslyn is extremely worried about losing her NDIS plan, which will force her to live the rest of her life in pain and be in a wheelchair well before she had hoped.
“The NDIS people need to look at the person and see how each individual is living and not just think everybody’s the same. Everybody is different, and some people are highly impacted by not getting what they need,” Roslyn said
“They are cutting everything away from me, so I can’t keep everything there to keep my body going, so my body is getting worse and worse.
“I just wanted to be able to have those three things to keep my body movable. Otherwise, my body is going to get worse, and then I’m going to end up in a wheelchair quicker than I was planning.”
Roslyn’s story demonstrates the urgent need for the NDIS have better awareness and understanding of neurological conditions like MS, and the need to include a neurological voice in the decision-making structure of the Scheme.
People living with multiple sclerosis join growing chorus for reforms to ‘clearly broken’ NDIS
ABC News – Emma Pollard, 31 August 2022
“When Kelly Engelhardt was first diagnosed with multiple sclerosis (MS) just before her 21st birthday she feared she wouldn’t be able to finish her teaching degree, get married and have children, but 20 years later she has achieved those things and more.”
VIDEO: People with multiple sclerosis join calls for NDIS reform’
ABC News – Emma Pollard, 31 August 2022
“The National Disability Insurance Scheme is under the microscope at the moment, and people with multiple sclerosis have joined the chorus of people calling for reforms.”
Kelly Engelhardt describes her experience of living with MS and the challenges with the NDIS.
MS Australia welcomes the opportunity to make a submission to the National Disability Insurance Scheme (NDIS) Review and contribute to improving the NDIS to ensure it meets the needs of people living with disability, including those with multiple sclerosis (MS).
MS Australia recognises that the NDIS provides crucial supports and has improved the lives of many people with disability. However, there are some outstanding issues to be addressed.
The Review must ensure there is a focus on improving the understanding of disability within the NDIS (including MS), making the NDIS more accessible and easier to navigate, recognising the value of early access and access to the most appropriate supports, and a greater emphasis on participant choice and control.
MS Australia recommends the following:
MS Australia supports the ongoing work of Minister Bill Shorten, and the NDIS Review Independent Panel to reform the NDIS and ensure that Australians with disability have access to the supports and services they need.
We look forward to engaging further with the Review Panel and any future reforms to the Scheme.
The state and territory MS organisations provide information, advice and support services to people living with MS and other neurological conditions, including referral advice and information, individual assessments and support, employment support, living arrangements, connection with others and much more.
You can contact your relevant state and territory MS member organisation via the links below: