National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 984 - Supplementary Submission
NDIS Amendment Bill 2026 – Senate Inquiry
A Submission from Parents of Person who is profound Autism
Dear Members of the NDIS Amendments Bill 2026 Inquiry,
As the parents and carers of a person who has a profound disability- due to a combination of autism and Intellectual disability- we submit these words as an example a ‘lived experience’ and ask that as a member of this Inquiry you try to envisage, for a moment in time, what is involved in living with and caring for a person who is severely autistic, with a severe Intellectual Disability and a wide range of other impairments. They are accurately described as being a very young person in the body of a man.
We welcome this chance to share our experiences as carers and plan managers as we have had endless negotiations with NDIS. This is our ‘lived experience’ as unpaid ‘reasonable supporters as parents We believe the NDIS Inquiry must be made aware that any cuts to funding will not only disadvantage the disabled person but place extra pressure and increased demands on a family who care for their disabled family member. Many families are exhausted and stressed after years of caring and advocating for their disabled child. There will be more family suicides as a result of losing hope for the future with inadequate support. Therefore we ask this inquiry to take time to understand the role of the carer and accept the following illustrated of examples of ‘lived experience’ of parents who are carers.
Example 1 Communication : On a daily basis we have to communicate with a wide group of individuals and organisations to ensure and maintain the care support and safety of the disabled person. Individuals such as support workers, speech therapist, dietitians, O.T. and service providers. This is necessary to ensure that needs are met and that limited funding is spent appropriately. This takes time and commitment, which as carers age becomes more difficult. ** The NDIS needs to respect the role, responsibility and commitment of the parents, who perform the role of, planners, managers and cares.
Example 2 : Defining Disability and Yearly Planning. The NDIS require validation of the disability of the individual and their abilities, every year. As the planners for our disabled family member, we are required to develop goals, budgets and plans which are individually designed and reflect the need for funding support. Every year for the past 12 years we have had to supply, to the NDIS, documentation which justifies the level of funding needed. We supply these to ensure our family member is safe, supported, and their health and wellbeing is maintained. These reports take time, cost money and require fact checking and adjusting for accuracy. It is accepted that these reports are required; however the NDIS must justify the necessity to spend NDIS funds every year when the disability of the person in focus has not changed and the disability is permanent and lifelong. **The NDIS has to find a better way of determine eligibility. The NDIS must now respond to the necessity and justify the cost required of supplying very detailed reports every year, year after year and explain why they are required when the disability of the person in focus has not changed and the disability is permanent and lifelong.
Example 3 : Community Engagement and Participation: The proposal by the NDIS to reduce funding which limits individuals ability to participate in the community is self-defeating. Our lived experience has shown that when the person we support is denied activities such as beach walks, picnic lunch in the park, joining a
group activity and a wide variety of similar activities, their behaviour deteriorates. They becomeaggressive, angry, frustrated and destructive. This behaviour can result in both harm to self and others and ultimately requires the spending of extra NDIS funds on providing additional behaviour support, additional high levels of care and increased precautions. **The NDIS therefore must analyse the cost differentiation of reduced community access funding against the consequences of short term and long term damage and deterioration of behaviour which would require extra expenditure.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 984 - Supplementary Submission Example 3 : Funding, Fraud and Budget Processes: As carers we are aware that services and providers are known to ‘overcharge’ and stipulate rates for services and as such we have been selective in engaging professionals. This is time consuming. To avoid fraud and over servicing, the NDIS needs to be firm on setting service fees and rates. NDIS participants seem to feel a need to use all the funds in an allocated budget in the 12 months period. This results in the ‘use it or lose it cycle’. **The NDIS must give serious consideration to enable individuals to use their funding more flexibly, use their funding more appropriately to gain support in a category which is underfunded, such as ‘therapy funds for medical support’ and protect individuals against overcharging and short comings in the level of service delivery.
Example 4: Assessments and Budgets: Our ‘lived experience’ has shown us that to obtain the essential maximum budget support required by an individual, there is a need to always concentrate and emphasise the negatives aspects of the person and document the negative behaviour, skill limitations and dependency, which are likely to attract more funding. However, most individuals have some positive aspects in their lives, as well as some skills, even if limited. **The NDIS needs to recognise and acknowledge these skills and in turn, acknowledge and reward them rather than disadvantage individual by cutting their funding.
Example 5: Compassion, Empathy and Understanding: Our lived experiences in dealing with the NDIS has revealed that NDIS employees have limited understanding of ‘disability’ and lack skill and empathy in speaking with, and assisting, those seeking and needing support. The daily lives of individuals with a disability and those who care for them are complex. NDIS employees responding to an issue need to exercise sensitivity, care and understanding. **The NDIS need to recognise the individuality of the person with a disability and not treat them like ‘Pawns in the system’. A person with a disability is more than just a name and a number. Respect and sensitivity by all staff are essential.
Example 6: Processes and Appeals: We have experienced the need to appeal a decision by the NDIS in regards to a very large, dangerous and damaging cut in the budget for the person we care for. During the three phases of an appeal to restore their funding, we found that the NDIS lacked the ability to have insight into the complexity of the individual’s disability. This was apparent from the following experiences which we, as carers, found during the appeal process. >Failure to communicate directly or individually with either the person or us as carers to tell and clearly state that their funding had been cut. > Failure to read existing and provided reports and supporting statements and then asking for additional reports covering the same area of disability in question. > Failure to provide timely responses to requests for information which resulted in drawing out the appeal process as long as possible, to the benefit of the NDIS, and the disadvantage of individual in focus. > During this process the NDIS, contrary to its own guiding principles, lacked, ‘Integrity, Transparency and Honesty. **The NDIS Amendment Bill must ensure that an individual with a disability has access to a right to appeal any decision by the NDIS, which, not only provides for a ‘Review’ and an ‘Internal Appeal’ but also an appeal to an outside independent Authority. Thank you for reading and considering this ‘Submission’. Please feel free to contact us to discuss any issues. Bruce and Karen Donaldson.
Note : Permission is granted to the publication of our names.