Submission to the Senate Community Affairs
Committee
My name is , I am the parent of a 30-year-old woman who has disability with high complex support needs. We live in the Maitland local government area which was the 3rd year NDIS trial site. We have experienced first-hand the benefits of NDIS, as individualise funding has been integral in supporting my daughter to lead and ordinary life, included in our community as an active and valued citizen.
Importantly the NDIS provides a framework for our nation to uphold the UN Convention on the Rights of People with Disability (UNCRPD).
I am afraid the NDIS Future Generations Bill 2026 undermines the rights of people with disability and sets us back on a course where people with disability must be congregated with others in order to receive support. The Bill undermines choice and control, natural justice to challenge government decisions and brings forth austerity measures for disability support.
This bill is the complete opposite of NDIS Act 2013 and its purpose to uphold the basic dignity of disabled Australian’s who along with their families and community advocated for.
I do agree the NDIS needs reform. The rollout of the NDIS saw the removal of important community supports- which led to Bruce Bonyhady quoting NDIS had become “the only life boat in the ocean”
I believe the NDIS Future Generations Bill 2026 is a cost cutting measure by the bean counters who give no consideration to the lifelong impact of their actions such as both direct and vicarious trauma which will just transfer the economic impact to other service system like health, education and housing.
Our family like others continues to experience the repeated need to advocate for our family members participating in consultations that go nowhere and the ongoing writing of submissions just to defend the basic human rights afforded all other Australians. I seek changes to the NDIS legislation and policy that heeds the lived experience of people with disability and clearly demonstrates how feedback informs reform.
Background
My daughter is an NDIS participant. She is 30 years old, loves music dancing, horses and is an artist and loves to be physically active and engaging in her community.
has complex support needs and requires support with all daily activities. The nature of her disability impacts all her fine and gross motor, vestibular, proprioception and sensory process functioning which impacts her; balance, spatial orientation, body awareness, difficulty grading force, ability to properly process pain signals, emotional regulation, and communication. ’s challenges with mobility means she uses a wheelchair, requires supportive seating, and requires skilled communication partners who know her well and are trained in PODD (Pragmatic Organised Dynamic Display) communication system both no tech (hard copy) and high tech device.
She has severe ataxia and uses a power wheelchair for mobility. has complex communication needs and requires “smart communication partners” who know her unique communication and assist with her PODD (Pragmatically organised dynamic display) communication system. I should also note that did not have functional communication prior to the age of 19 years. NDIS gave choice in who to engage to support her to build Augmentative Alternative Communication. Prior to NDIS received Speech Therapy through CPA whose recently graduated Speech Pathologist did not have the necessary skills to be a communication partner to build the function of PODD to suit ’s needs.
Registration for High risk support and complex needs
’s support needs meet the criteria of Intensive support Core funded supports. Prior to NDIS her support needs were 2:1 for all support in the community. The complexity of her support needs means she requires consistency and predictability in how her supports are provided. We have directly recruit her support workers and have done so since the roll out of NDIS, this means we have had consistency in quality of work and retention of skilled workers with several supporting my daughter for nearly 10 years.
’s supports are consistent and safer and more stable than anything that could be provided by registered large providers and far more cost effective. I believe registration of high risk supports requires a carve out for family governed , self-directed supports individualised to the needs of a persons with intensive support needs like . Large providers historically don’t have the retention of skilled workers and there for this model is not cost efficient due to the constant need for buddy shifts and building the capacity of the person with disability to become comfortable with new workers providing intimate personal care supports. Frequent changing of support workers caused fatigue, anxiety and trauma for .
I-Can assessment, algorithms and limits to external merit appeals undermine the core tenets of the NDIS as we currently know it.
The I-Can or any other standardised assessment cannot accurately capture a person’s needs. It can not factor in their personal circumstances, living arrangements, life choices, or life aspirations. It is unclear how much weight this information will carry in budget decisions, how assessors will interpret them, and the ability to challenge decisions if personal circumstances were not properly recognised.
Human discretion and intervention are a vital requirement in ensuring budget allocations are right for each person. It is offensive to reduce a persons life to algorithms and remove the choice of spontaneity and opportunity for ones goals to change.
50% cuts to social and community funding .
My daughter requires skilled support 24/7 hours per day with 1:1 support for social and community funding. She requires trained communication partners to enable her to communicate what she wants to say when she wants to say it. 50% cut would place her at grave risk and also isolate her from the community. Community keeps community safe this 50% cut with increase the risk to people with complex need of abuse, neglect and exploitation. This will lead to deaths and also
overwhelm the Quality Safeguards commission. My daughter could not complete her daily physiotherapy exercises, her numerous appointment with another person tagging along. She actually requires 2:1 for 5 hours a week to support the implementation of her physio exercises.
This is despite the fact that she has spent her whole life avoided congregated care by attending mainstream school and engaging in genuine community interests and does not tolerate the segregated day program model of service which would significantly be a risk to her health and wellbeing.
The only way my daughter could manage this 50% cut to social economic community participation is if this funding was added to activities of daily living. In reality this cut to funding would likely cause regression back to pre NDIS days wear 2:1 supports were required for community access.
In Summary
Ensure people are not herded into provider models that do not suit their lives or needs
Ensure assessment processes accurately reflect the realities and complexities of supporting people with high and complex support needs
Ensure self-management and family-governed and self-directed arrangements are protected.
Ensure People with disabilities and their families are meaningfully included in reform processes.
Ensure genuine weight is given to the lived experience of people with disability and those alongside them.
Ensure transparency and opportunities for genuine feedback to inform reform and decision making.
Ensure any reforms do not undermine Australia’s commitments under the United Nations Convention on the rights of Persons with Disabilities and in fact reforms should enhance rights of people with disabilities.
Thank you for taking the time to read my submission