Submission 2078

To the Committee Secretariat

Regarding: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

Dear Sir or Madam,

I am the mother of and the primary carer for a 23-year old woman who has had severe, complex disabilities and high medical needs since birth.

Functional Capacity

I support the concept of assessment for NIDS Supports as necessitated by Functional Capacity, however consideration of the fluctuating nature of health-related disabilities must be considered. My daughter with intractable epilepsy (otherwise known as resistant to medication) has reasonable quality of life on most days. However, there are frequent episodes, some brief but many protracted over several months, where her capacity to interact, engage and function to a ‘reasonable’ capacity is significantly reduced. Likewise, Cerebral Palsy does NOT improve with age. In fact, muscles lose their strength and effectiveness (both externally and internally) resulting in more episodes of choking and increasing the risks of lung disease.

How someone’s Functional Capacity is assessed must consider Participants’ fluctuating capacity and regression.

Unscheduled plan reviews on request

Since my daughter was accepted into the NDIS in 2017, we have experienced helpful interactions with the NDIA whenever my daughter was allocated a Senior Planner who was experienced in disability requirements. Whenever a Planner did not seek to comprehend the functional incapacities of my daughter’s disabilities but focused on ‘streamlining the budget’ her plans were consistently underfunded and necessitated early reassessment. At our most desperate, only escalation to the Minister of Disability averted my daughter being restricted to her bed due to funding shortfalls.

To minimise unscheduled plan reviews on request, diligent and thorough planning collaboration with Participants must be uppermost to ‘get it right the first time.’

Automatic plan renewals instead of regular full reviews

My daughter is ‘non-verbal.’ Despite NDIS documented Guidelines and Code of Conduct promoting Participants’ rights to communicate in their preferred mode of communication, the NDIA insist on interacting with my daughter via telephone – a mode impossible for her to use. For expediency or ‘efficiency’ NDIS staff have chatted with me instead and I have been tricked twice into a full plan reassessment from a “Check In”

Submission 2078

Phone Conversation“ where a new plan has been generated by entirely cutting out my daughter’s participation. Between October 2025 – March 2026 my daughter’s confidence in being able to action her NDIS goals and our trust in the NDIA was restored by a Senior Planner who diligently took the time to communicate directly with my daughter via teleconference. My daughter was seen, heard and shown respect. In sharp contrast, when this Senior Planner was abruptly ‘moved into a different role’ another Planner sent evidence documentation previously submitted directly to the Higher Delegate without a planning meeting with my daughter. In the follow-up “Plan Implementation” meeting when the Planner met my daughter via teleconference, she realised her mistakes and my daughter’s plan was revised.

Automatic plan renewals will work if the plan is constructed appropriately from the beginning; but as per our lived experience, this only happens when the Planner thoroughly understands Disability unique challenges and personally meets with Participants. Anything less devalues the personhood of people with disabilities.

Government power to reduce groups of supports.

The depth of compassion is limited by experience. What is ‘reasonable and necessary’ to an ambulant person navigating the usual stressors of life and a difficult world looks vastly different to anyone who can’t communicate verbally, or move themselves independently, while habitually being overwhelmed by sensory triggers and surviving the electrical malfunctions of brain synapses going berserk with seizures. Incredibly, my daughter achieves ‘reasonable function’ while being afflicted with all the above, in her determination to be independent and thriving. We recently had a Norwegian visitor stay with us, who spent time with my adult children being social out in the community. She was stunned to see so many people with disability ‘out and about’ and asked, “Do you have more disabled people in Australia?” It was a moment when I could proudly say the NDIA has achieved helping make people with disabilities visible and accessible - instead of being shut away as they are in most of the rest of the world.

My daughter relies heavily on the input of her therapists and her support worker team to help her implement the various prescribed therapy programs to develop her daily living skills and to maintain her body’s ongoing wellbeing. In the NDIA’s bid for “scheme sustainability” physiotherapists are being devalued by requiring their specific Disability expertise to be delivered at the lower cost model relegated for rehabilitation of veterans. Experience is being driven out and people with disabilities are left with less qualified allied health professionals. The NDIA has refused to pay High Intensity Daily Personal Activities (HIDPA) service providers “nursing rates’ for complex medication administration; instead, they are being told to train support workers to perform medical procedures.

Submission 2078

Such decisions, made behind closed NDIA doors, send an unmistakable message to people with disabilities and those who care for and advocate for them: People with Disability just cost too much to care for properly.

Giving the NDIA legal power to reduce the amount of funding in any aspect of NDIS Supports just validates what the NDIA are doing regardless; the Principles enshrined in the Disability Act are being eroded already without any accountability.

Pricing, indexation, and plan management

I welcome the pricing and indexation of NDIS service provision! In the past 10 years the role of a support worker has changed from disdain to ‘easy money’. Now, anybody can be entrusted to be responsible for the most vulnerable of society. The NDIA publishes admirable and comprehensive guidelines in their High Intensity Skill Descriptors and NDIS Workforce Capability Framework. To date, after almost 18-months’ search I have yet to find a HIDPA service provider capable of delivering services complying with these standards. To provide for my daughter’s high intensity and complex support needs I have found the most reliable source in the private/sole trader workforce. It means I must take on responsibility to upskill ‘standard’ and unregistered support workers to the required competencies of providing HIDPA support. I must pay top-dollar for these sole traders who understand their worth. In contrast, I must accept substandard and often incompetent agency support workers who are paid the same price irrespective of whether they drive a Participant somewhere, or take them to the movies, or get run off their feet exhausted by high intensity support needs.

The NDIA are making no distinction between the quality and competency of support workers, indiscriminately driving up these salaries to consume more of the Participants’ dwindling funding for less valuable or appropriate services.