Submission to the Senate Inquiry into the National Disability Insurance Scheme
Amendment Bill
I am writing as the wife and primary carer of my husband, , who lives with young onset Alzheimer’s disease (primary progressive aphasia variant). He was diagnosed in 2022 at the age of 56 after a long career as a secondary school teacher. His condition is progressive and irreversible.
He can no longer work, drive, be left alone, or go out into the community independently, and he requires assistance with communication in all its forms. We rely heavily on the NDIS, particularly support coordination and community and social participation supports, which enable him to continue living at home with me as his primary and sole carer.
I have been distressed by public statements that denigrate disability support workers or downplay the importance of community participation supports. For people living with progressive cognitive disabilities, these supports are not optional extras. They are essential to maintaining safety, dignity, independence and quality of life, and they also make it possible for family carers to continue in their caring role.
I wish to raise four concerns based on our experience of the NDIS.
- People with progressive neurological conditions need access to rapid response adjustments to funding and supports as their needs increase.
People with young onset Alzheimer’s disease experience progressive and sometimes rapid deterioration. A plan that is appropriate today may become inadequate within weeks or months. I am concerned about proposals to extend plan durations while making unscheduled reviews more difficult to access.
The NDIS must be able to respond quickly when a participant’s needs increase. This may include additional support workers, continence supports, mobility equipment, transfer assistance or twenty-four-hour supervision. Delays in approving essential supports place participants and carers at unnecessary risk and can lead to avoidable hospital admissions and/or premature admission to residential aged care.
The same principle applies where a plan relies on ‘informal supports’ (ie voluntary assistance provided by unpaid members of the community, generally family or friends). If a spouse or other family member becomes unavailable or can no longer provide the level of support assumed in the plan, there should be a straightforward pathway to timely adjustments to funding and supports.
I have communicated with spouses of people affected by young onset dementia who describe waiting months for funding following a significant deterioration in their loved one’s condition, causing crises.
- Ongoing support coordination service is essential for people with cognitive impairment.
I understand the Government is proposing to replace Local Area Coordinators and Support Coordinators with NDIS Navigators. While I welcome any reform that simplifies the system, it is essential that the needs of people with cognitive impairment are recognised.
I have been advised by ’s Local Area Coordinator that I - as his primary carer and nominee - would “need to explain”, in a review, why needs continuing support coordination. Because, of course, is unable to explain this himself - which you might think would illustrate the point adequately. These kinds of stories strain credulity, but they are distressing situations for those of us experiencing them.
People with progressive cognitive conditions do not simply need advice about how to access supports. They need someone to actively coordinate those supports on an ongoing basis. They cannot reasonably be expected to contact providers, organise appointments, manage changes, resolve problems or navigate an increasingly complex system. Their disability directly affects memory, communication, judgement and executive functioning.
Although a family member may act as an NDIS nominee, assisting with plan changes at a high level, this is not the same as providing professional coordination of provider supports. I am concerned that current policy appears to assume that, where a competent family member is present, that person can take on this role. In my experience, this is neither reasonable, sustainable nor safe.
Family members are not disability professionals. They may have their own health conditions, remain in paid employment, or simply reach the limits of what one person can reasonably undertake over many years. Relying on a single family member also creates a fragile system. If that person becomes unwell, dies, or is otherwise unable to continue, the participant can be left without the coordination and advocacy on which their supports depend.
- Community participation and access supports both the participant and the carer and is not a “frill”need.
Community and social participation is the main NDIS support my husband uses. Because of his cognitive impairment, he cannot safely access the community on his own. With the support of a disability support worker, he is able to remain physically active, socially connected and engaged with the world around him.
This support is equally important for me as his carer. Because he cannot be left alone safely, every hour he spends with a support worker is also an hour during which I can attend appointments, shop, manage the household, or simply have some respite. Reducing funding for community and social participation therefore affects not only the participant but also the sustainability of family care.
Especially where there is only one family member providing the vast majority of hands on support, reducing these services is likely to result in inhumane levels of stress and exhaustion among carers, which will also be to the detriment of the people they support.
- Families should not be expected to absorb the financial costs of inadequate supports.
There are significant long-term financial consequences for spouses of people with young onset dementia.
Many spouses reduce their working hours or leave paid employment altogether to provide care. This can result in years of lost income, reduced superannuation and diminished financial security in later life.
Where NDIS funding is insufficient to meet a participant’s reasonable support needs, families are often left with little choice but to purchase those supports themselves. For a married couple, those costs are paid from shared savings and assets, reducing the financial security of the surviving spouse.
The NDIS was established so that people with disability could receive reasonable and necessary supports regardless of their personal wealth. It should not operate in a way that effectively requires families to deplete their lifetime savings to fill gaps in essential disability supports.
Recommendations
I respectfully ask the Committee to recommend that:
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participants with progressive neurological conditions have access to a streamlined and responsive process for timely adjustments to funding and supports as their needs increase;
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participants whose plans rely on informal supports have timely access to adjustments if those supports change or cease;
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any new Navigator model includes ongoing coordination for people with significant cognitive impairment, rather than simply providing information and referrals;
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legislation and policy do not assume that family members will be available to provide ongoing supervision, coordination and advocacy that should be available through the disability support system - their contributions must be recognized as voluntary and not assumed to be indefinitely available.
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adequate funding for community and social participation be maintained for participants who require one-to-one support to access the community safely.
Thank you for considering my submission and the lived experience of families like ours.