Submission 55
Dear seniorclerk.committees.sen@aph.gov.au,
My name is Valerie. I am 62 years old, married, and live in Brisbane. I have lived with my disability for over 30 years. My husband and I have two grown daughters who no longer live at home.
I am writing to explain how the proposed NDIS changes will affect my daily life and the lives of many other Australians living with disability.
Before becoming unwell, I was a highly trained Registered General Nurse and Midwife. Unfortunately, after suffering a severe strain of influenza followed by a Hepatitis B vaccination, I became seriously ill and was later diagnosed with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Postural Orthostatic
Tachycardia Syndrome (POTS).
ME/CFS is a severe, chronic, and disabling illness that causes extreme fatigue and post exertional malaise. There is currently no cure or definitive diagnostic test for ME/CFS.
Since becoming ill, I have struggled with mobility, sensory overload from light and noise, cognitive impairment, and dysfunction affecting many bodily systems. I rely heavily on my two support workers for assistance with medical appointments, personal care, meal preparation, activities of daily living, and domestic duties.
My husband works full time but is also living with permanent injuries following a serious car accident four years ago. He has undergone three back surgeries and now lives with significant spinal injuries and permanent lifting restrictions. As a result, he is unable to provide the level of physical support he once could.
If my NDIS funding is reduced or removed, I will once again become isolated, as I was before the NDIS existed. Without my support workers, I will be unable to access the community, attend medical appointments, or maintain any meaningful social interaction. This would have a devastating impact on both my physical and mental health.
I am deeply concerned about the proposed NDIS changes for several reasons.
- Functional Capacity Assessments The proposed definition of functional capacity appears to assess people without considering the assistance they receive from support workers, assistive technology, home modifications, or environmental factors. This approach is inconsistent with the social model of disability that underpins both the NDIS and Australia’s obligations under the Convention on the Rights of Persons with Disabilities.
I am also extremely concerned that assessments may rely on questionnaires completed by NDIS staff without appropriate medical training or expertise in disability. Disability affects every individual differently, and complex conditions cannot be accurately assessed through a simple standardised process or algorithm.
Submission 55
People with disability already spend thousands of dollars obtaining Functional Capacity Assessments from qualified Occupational Therapists and specialists, yet many feel these reports are ignored during plan reviews.
I am also concerned about reports that participants may lose access to the scheme if they fail to answer phone calls or respond quickly enough. This unfairly disadvantages people who are deaf, blind, cognitively impaired, intellectually disabled, or otherwise require communication support.
- “Appropriate Treatment” Requirements The proposed changes suggest that treatments may be considered “appropriate” regardless of a person’s financial situation or location. This could force people to seek specialists and treatments across Australia, even where conditions are permanent and incurable.
In the case of ME/CFS, there is currently no cure anywhere in the world. Despite this, some people with ME/CFS are still pressured into undertaking Graded Exercise Therapy (GET), despite growing international evidence that it can worsen symptoms and cause significant harm. NICE guidelines in the United Kingdom have already removed GET from recommended treatment guidelines.
I am concerned about who within the NDIS will determine which treatments participants must pursue, particularly when decision-makers may not have medical qualifications and often appear not to consider existing specialist evidence.
People with disability should retain the right to refuse treatment without risking the loss of essential supports.
These proposed changes will disproportionately disadvantage lower-income Australians who cannot afford travel, specialist consultations, or repeated treatments. They will also place further pressure on already overwhelmed specialist waiting lists.
- Cuts to Social and Community Participation Supports Social and community participation is not an optional extra. It is fundamental to inclusion, independence, wellbeing, and dignity.
The original intent of the NDIS was to provide people with disability with “choice and control” over their lives. These proposed changes appear to move away from that principle and toward greater control by the system itself.
During COVID-19, the broader community experienced how damaging isolation can be. Yet now people with disability are being pushed back toward isolation because social participation is viewed as non-essential.
Without support workers, I cannot independently access my wheelchair, attend appointments, visit family and friends, or participate in the community. I require physical assistance with mobility and personal care. Restricting support hours removes independence and reduces quality of life.
Submission 55
The proposal to move people toward community hubs and group-style supports risks returning many Australians with disability to institutional-style care arrangements that the NDIS was originally designed to replace.
Removing community supports removes inclusion, autonomy, agency, and participation — the very foundations upon which the NDIS was established.
People with disability are already among the most marginalised and vulnerable members of our community. These proposed changes risk increasing discrimination, isolation, and inequity rather than improving outcomes.
Thank you for taking the time to consider my submission and the lived experience behind it.
Kind regards,
Valerie
References:
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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Emerge Australia
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Carruthers, B. M. et al. “Myalgic encephalomyelitis: International Consensus Criteria.” Journal of Internal Medicine, 2011.
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National Institute for Health and Care Excellence (NICE). “Myalgic Encephalomyelitis (or
Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management.” NICE
Guidelines, 2021.