Submission Regarding Proposed NDIS Changes
Executive Summary
This submission is made by the primary guardian, advocate and informal carer of two adult brothers aged 62 and 59 who live with profound and lifelong disabilities. The family relies heavily on NDIS-funded supports to maintain safety, health, community participation and quality of life. Any reduction in supports, flexibility or community access would have significant consequences for both participants and their family carers.
Key Recommendations
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Maintain existing levels of support for participants with complex and lifelong disabilities.
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Protect community access and social participation funding.
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Preserve flexibility within NDIS plans to meet changing support needs.
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Ensure reassessments are evidence-based and consider the views of long-term carers and guardians.
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Prevent policies that may force participants into inappropriate residential or institutional settings.
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Recognise and support the role of informal carers in preventing hospitalisation and system failure.
Participant Profiles
Participant A (62) lives with treatment-resistant schizophrenia, severe mobility impairment, cognitive decline and multiple medical conditions. He requires significant daily support, mobility assistance and ongoing medical oversight.
Participant B (59) lives with cerebral palsy, acquired brain injury, schizophrenia and complex medical needs. He is non-verbal, wheelchair dependent and requires support with all activities of daily living.
Together they require 24-hour support, seven days per week.
Current Support Needs
Current supports include approximately 10 hours per day of one-to-one support and 14 hours per day of shared support. These supports assist with medication management, diabetes care, insulin administration, bowel care, personal care, transport, appointments, community participation and daily living activities.
Both participants require regular GP appointments, specialist reviews, pathology, allied health services, physiotherapy, hydrotherapy and exercise programs to maintain function and reduce deterioration.
Family and Carer Impact
The participants reside with their elderly mother who has significant health issues and is no longer physically capable of providing the level of care required.
Responsibility for coordinating and managing all aspects of care has fallen to a single family member acting as guardian, advocate and informal carer. This includes appointment coordination, NDIS management, support worker oversight, medication management and advocacy across multiple systems.
The informal carer also lives with disabilities and health challenges. Without existing NDIS supports, the demands placed upon the family would become unsustainable.
History of Institutionalisation
One participant previously experienced institutional care during the 1990s and early 2000s. During this period, serious neglect and inadequate care were experienced, resulting in significant harm and hospitalisation.
Following these experiences, the family assumed responsibility for care in the community. The NDIS has enabled the participants to remain in a safe family environment while accessing appropriate supports and services.
Impact of Proposed NDIS Changes
Any reduction in supports, flexibility or community participation funding would have significant consequences.
Potential impacts include:
- Increased isolation and social exclusion.
- Reduced access to essential medical appointments and therapies.
- Accelerated physical and cognitive deterioration.
- Increased falls, injuries and preventable hospital admissions.
- Greater burden on ageing family carers.
- Increased risk of crisis presentations and more costly future interventions. For participants with lifelong and complex disabilities, these supports are not discretionary. They are essential for health, safety and dignity.
Conclusion
The NDIS has provided opportunities, inclusion and quality of life that were previously unavailable to these participants. It has allowed them to remain connected to their community, access necessary healthcare and live with dignity.
The participants represented in this submission are not statistics. They are human beings whose wellbeing depends upon appropriate supports.
I respectfully urge decision-makers to protect the rights, dignity and independence of disabled Australians and to oppose measures that would reduce supports, restrict community participation or increase the risk of isolation and deterioration for vulnerable people and their families.