To improve the NDIS for the MS community, we believe there are three essential areas for reform:
1. Better representation of people with MS and other progressive neurological conditions within the National Disability Insurance Agency (NDIA).
2. A better understanding of MS and the needs of people with MS.
3. Provision of disability supports and services regardless of age.
The NDIS is Australia’s first publicly funded national disability insurance scheme. Legislated in 2013, and in full operation since 2020, the scheme has provided life-changing benefits to many Australians.
However, the NDIS is not without fault or its critics.
Over the last decade and across 28 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 Scheme, there are countless others who have been left behind.
Now with a new Government promising to rebuild trust in the NDIS, to ensure fairness and bring forward a review of the NDIS, originally scheduled for 2023, there are many reasons for optimism.
MS Australia stands ready to support the new Labor Government’s intent for significant reform.
1.6 million Australians live with progressive, degenerative neurological or neuromuscular conditions. MS Australia is calling for the neurological voice to be incorporated into the advisory and consultative structure of the NDIS/NDIA, to ensure fair representation and better support for our community.
1. Representation on the NDIA Industry Chief Executives Forum
The NDIA currently engages with NDIS provider peak bodies and provider representatives on improvements to the NDIS and the NDIA’s processes and practices through the Industry Chief Executive Forum (ICE Forum) . The ICE Forum provides an opportunity for two-way collaboration where the NDIA can test policies, practices and processes to improve the NDIS with ICE Forum members and to gather views and feedback on key issues from Forum members.
The Forum also gives members the opportunity to engage directly with the NDIA CEO. There is currently no neurological or neuromuscular voice in the ICE Forum.
2. Establishment of an advisory group
The Autism Advisory Group was established in 2018 to provide a strong voice on behalf of people who participate in the NDIS. The group includes autism experts, service providers and people with lived experience of autism and advises the NDIA on autism.
A similar advisory group representing the neurological/neuromuscular community would be of enormous benefit to the NDIA.
The Neurological Alliance Australia (NAA) is an alliance of not-for-profit peak organisations representing adults and children living with progressive neurological or neuromuscular diseases in Australia. The Alliance was established to promote improved quality of life for people living with these conditions and increased funding to support research. The Alliance Members are: Dementia Australia, Brain Injury Australia, Emerge Australia, Huntington’s Australia, Motor Neurone Disease (MND) Australia, MJD Foundation, MS Australia, Muscular Dystrophy Australia, Muscular Dystrophy Foundation Australia, Parkinson’s Australia, Spinal Muscular Atrophy Australia, Leukodystrophy Australia and Polio Australia.
MS Australia recommends that:
Greater awareness, education and understanding of MS within the NDIA will ensure better support for people living with MS.
In February 2019, an ‘MS Snapshot’ was commissioned by the NDIA and developed by MS Australia to assist NDIA staff, such as planners or LACs (Local Area Coordinators), to better understand MS and improve their interactions with people with MS. It sets out the sort of information about MS one could reasonably expect NDIA staff to know.
Unfortunately, there is little evidence that this material has made any difference to the interactions of people with MS with the NDIA, especially those who experience invisible symptoms or symptoms that come and go.
A recent CSIRO publication in Australian Health Review entitled, “Do people with multiple sclerosis receive appropriate support from the National Disability Insurance Scheme matching their level of disability? A description of disease burden and societal costs in people with multiple sclerosis in Australia (BAC-MS)” published in September 20211 is the first paper in Australia that correlates disability with the approved package value. The study has found ‘striking variability in packages approved’ citing restricted mobility as the main driver or decision-making factor. This appears to be consistent with the idea that visible disability is more easily understood than invisible disability or functional impairments such as cognition decline.
MS Australia recommends that:
Rebecca, 45, is an ex-health professional, and a single mother with a one-year-old child. She lives with her widowed mother who is 79. Rebecca’s sister had to give up her work for eight months to care for Rebecca after post-partum progression. Rebecca has secondary progressive MS, EDSS of 4.5. She can’t walk more than five metres unaided. She is at risk of falls and has fallen in the past. She experiences incontinence and has a clinical diagnosis of depression and anxiety. Rebecca has brain fog daily, chronic fatigue, processing difficulties, struggles to complete any paperwork, and word-finding difficulty.
Rebecca was contacted by the NDIS upon receipt of access request form to be asked “can you catch the bus and walk 10 metres?”; Rebecca answered that ‘it would depend on the day’ and was subsequently rejected over the phone.
All Australians with MS should be entitled to support from the NDIS regardless of their age.
Those aged 65 and over when the NDIS was introduced and those who develop a disability after turning 65 are ineligible for the NDIS and must pursue their disability needs through the aged care system.
This is a concern because the aged care system is designed to address frailty and dementia rather than the disability needs of people with MS, especially those whose progression of disability has been slowed or delayed through disease modifying treatments. This age cut-off has created a grossly inequitable two-tier system of support.
People outside the boundaries and eligibility of the NDIS, especially those living with fluctuating or episodic disability or chronic health conditions not deemed as permanent disability, are missing out.
Those living with neurological conditions or those living with mental health issues are experiencing gaps in service delivery, access and continuity of care. Supports are available only if self-funded or through the aged care sector, which is capped and means tested. This discrimination based on age is unacceptable and unfair.
The inequities between the aged care sector and the NDIS must be addressed.
People with MS aged 65 and over need adequate support to stay at home, engage in the community, stay at work with appropriate support and flexibility. This would ensure financial security is maintained to cater for such things as housing, aids and equipment and a quality social life. In general, aged care support has a much greater focus on personal care and in-home support rather than community participation – an important, often vital aspect of life for a person affected by a chronic condition such as MS.
MS Australia recommends that:
Lyn is 62 years old. Her husband Bob is 70 years old and has been living with MS for the past 30 years.
Because of the current discriminatory aged cut-off in place with NDIS, Bob can only access My Aged Care, which doesn’t provide the same amount of assistance. Presently Bob has been waiting 15 months for any response to his approved aged care level 4 application. In that 15-month period, they have spent in excess of $10,000 directly attributable to meeting Bob’s needs. With an NDIS package, these costs would have been covered; with no requirement for co-payment.
Disability affects more than the person with the disease, it also has a huge impact on the life of the carer, as well as family. In this case, if Lyn was the one with MS, she would get an NDIS package and their quality of life would be a whole lot better off!
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.”
“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.
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: