Disability advocates are calling on the Government to recognise the true financial and emotional cost carried by families caring for disabled whānau, warning many carers are being pushed to breaking point as pressures on support services continue to grow.
The call comes as IHC and disability sector organisations respond to ongoing reforms within Disability Support Services, saying any changes to funding and care systems must properly account for the unpaid labour and sacrifice made by family carers across Aotearoa.
Advocates say thousands of families provide around-the-clock support for intellectually disabled relatives, often giving up careers, income opportunities and personal wellbeing to fill gaps in the disability support system. Many carers report experiencing financial hardship, exhaustion and social isolation while trying to navigate increasingly complex support processes.
The Government has recently announced additional funding aimed at stabilising Disability Support Services and residential care systems, including major investment through Budget 2025. Ministers say the funding is designed to improve consistency, sustainability and certainty for disabled people and service providers.
However, disability groups argue the current system still relies heavily on unpaid or under-supported family care, with many whānau carrying responsibilities that would otherwise fall on state-funded services. Advocates say the true economic value of family caregiving is rarely acknowledged in policy decisions or funding models.
The debate follows years of tension over family care payments and disability funding rules in New Zealand. Legal challenges and policy reforms have repeatedly highlighted concerns that disabled people and their families face inequitable treatment within the support system.
Disability organisations say Māori and Pacific families are often disproportionately affected, with whānau-based care deeply embedded within cultural expectations and community structures. Advocates warn many carers are now facing increased financial stress due to rising living costs, housing pressures and reduced flexibility within parts of the disability support system.
The wider disability sector has also expressed concern about growing demand for services as more disabled people require support while workforce shortages continue affecting care providers nationwide.
Advocates say future reforms must move beyond simply containing costs and instead recognise caregiving as essential social infrastructure supporting the wellbeing and dignity of disabled people throughout Aotearoa.
Pressure is now mounting on ministers to ensure family carers are fully included in ongoing disability policy reviews and future funding decisions.
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