My brother Max has a permanent and significant disability. Laying down on his rug in the living room, Max enjoys a strict routine of tapping away on his toy piano or listening to Millionaire Hot Seat. Without those simple stimulants, Max gets upset! Our household TV has hundreds of pre-recorded episodes of Hot Seat, usually turned on around 3 pm everyday, to Max’s delight
The 2024 National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) has been tabled and is set to be rolled out this year. The Bill was initiated in response to the National Disability Insurance Scheme (NDIS) Review that occurred in 2023.
In June this year, The Senate Community Affairs Legislation Committee delivered their report on the proposed Bill, providing new amendments and recommendations. Included was the shift of First Ministers to have the ability to agree to NDIS rules alongside State and Territory Disability Ministers. A further amendment is the requirement for a ‘consultation statement’ to exist in conjunction with all legislative instruments made under the NDIS Act.
Up to eight Australian disability advocacy groups, including People With Disability Australia (PWDA), say the committee's recommendations are “not enough to address the legislation’s shortfalls.”
In a media release in June, PWDA President Marayke Jonkers said that “Senators must not pass this legislation in its current form.” President Jonkers said that “there is a need for greater detail regarding methods for assessing needs and funding plans, to ensure the changes cater to individuality”.
“Our community deserves more than premature legislation that could undermine our access to essential support,” she says.
The committee aims to release further considerations and an additional report this August. For families living with a disability, it feels as if through all proposed amendments, we are yet to see a detailed outline of how individual functional assessment will be implemented.
Concerns from the disability community and advocacy groups are nothing new.
Bodies like PWDA have outlined significant issues regarding the functioning of the scheme for years, with further concerns over whether the proposed reform is enough for months. PWDA outlines that difficulties accessing the scheme, insufficient funding for supports, and deficit-based assumptions about individuals have been long standing and widely recognised issues.
In past and current processes, the NDIS focuses on diagnostics rather than function. This means that often a person with severe functional impairment who is not in the given list of disabilities may struggle to get support.
My brother Max is only one example of this, since his ability is unable to be narrowed down into only one category. This process completely disregards the complexity of each participant's ability, and in conjunction, the unique support they require.
To ensure my family can provide simple enjoyments for Max, we have relied on funding from the National Disability Insurance Agency (NDIA), ever since its initial rollout in 2016.
Without the funding for Max’s two advanced hearing aids, he would never have been able to
find his love for music and game shows.
For some, funding for leisure activities such as group camps, or physiotherapy to garner
growth and change in their body is essential. Yet Max’s permanent lack of cognitive
and physical function means those funding groups do not apply.
The NDIS currently neglects individual participant complexities and is not currently catering correctly to the community. Often a person with severe functional impairment who is not in a specific list of disabilities encounters difficulties accessing support, or the plan given may not be well suited.
The NDIS requires participants to travel to certain offices around Melbourne to reassess their
plan every 12 months. This is to ensure participants are receiving appropriate support that can enhance their skills and independence.
Max’s ability does not fall under any type of “condition” and there have never been any growth prospects for him. The annual requirement to transport Max in the car was not practical. We would show up, only for a 5-minute meeting in which the assessor would take one look at Max and tell us that his disability was never going to change, as if we didn’t already know that. After five consecutive years, these meetings became pointless, and a saddening experience. Our family raised these concerns to assessors and after a year of consultation, we were able to push these assessment meetings out to every two years.
For some, this meeting would be a day to look forward to each year, but for someone like Max, the experience was redundant and emotionally taxing for our family.
Max’s need for high-intensity 24/7 care is at the forefront of priorities for us. ABS found that 1,464,415 people with a disability were identified as requiring assistance with core activities in 2021. My mother Monique ever since Max’s birth has been his primary caretaker, which has resulted in a lack of time to consider permanent employment.
Under the current NDIS regulations, family members will only receive funding in “exceptional circumstances,” such as if there is a significant risk of harm or neglect to the participant without said family member. There have been very few cases in which family
members have been able to receive funding, and it has caused outrage in the disability
community.
My family has been fortunate enough to employ two support workers for Max. Despite adoring my brother, it ensures my parents have a sense of independence in their own separate worlds. Max thrives off sensory stimulation from new people, and that’s something we’ve always recognised.
Yet for many, even with NDIS funding, the prospect of employing support workers is not financially feasible. Particularly in conjunction with the costly equipment one might need to function.
Findings from the Australian Bureau of Statistics (ABS) show that NDIS participants generally live in households with a lower level of equivalised household income. In 2021, 9.2% lived in households with an equivalised income of over $1,500 per week, less than half that of the rest of population (20.5%). I view the external support Max receives as an integral part of our family and it’s unimaginable that many are not able to access it, with family members required to fill that role entirely.
Funding for family members is extremely limited and a rare occurrence. Every case is unique in this sector, and this understanding must be at the forefront when the new NDIS reform is rolled out.
It’s now over four months since the NDIS Amendment Bill entered parliament, and majority support for the bill has still not been secured, with a second senate enquiry looming. Significant structural issues have affected this community for far too long. If individual functional assessments are not methodically initiated soon, the disability community in Australia will suffer immensely.
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