Stretched to the limit: The anguish of families waiting on disability funding
Ten months after qualifying rules for support services for disabled people were thrown into confusion, decisions on a new regime are yet to be made. Colleen Brown speaks to families left in limbo, including (above) Steve and Fiona McKenzie with children Jasper and Claudia. Claudia has been on a waiting list for residential care for five years. Photo: Martin Hunter
After years of lobbying, the formation in 2022 of a standalone Ministry for Disabled People was welcomed as a significant step forward in support services for about 50,000 disabled New Zealanders, their families and carers. The separate ministry, Whaikaha, was responsible for services formerly funded and allocated by the Ministry of Health. It also took on the functions of the Office of Disability Issues.
But less than two years later, on March 18 last year, the new coalition government effectively suspended several of the support services that disabled people and their carers could claim, citing a budget blowout.
Whaikaha was under financial pressure from the start, inheriting a complex funding system and a mix of policies and pilot programmes that had evolved during decades. Coupled with the increasing number of people seeking disability support (13% a year for the past 5 years) was the move during Covid – when services such as in-home support and respite care were not readily available – to relax rules for accessing services and equipment to support families with disabled children.
This “flexible funding” model, already being trialled in places, gave disabled people and their families more choice and control about what services they purchased, for instance, the ability to buy items such as a trampoline for use by a disabled family member and give carers a break.
But in September 2023, a unit of the Department of the Prime Minister and Cabinet warned the then Labour government that Whaikaha’s $2 billion operating budget was insufficient to meet needs.
The coalition government’s March crackdown came without warning to families; public communication was via social media. Restrictions were placed on various categories, including carer support and individualised funding (see “Support categories”, below). “Expenses” associated with respite, such as electronics, or recreation items that gave carers a break, and self-care services for carers and whānau, were excluded, as was travel-cost reimbursement for disabled people, whānau and support persons. Carers could no longer provide koha for volunteers providing support. Flexible funding was reduced to a few specified items or services.
The then Disability Issues Minister, Penny Simmonds, told Parliament Whaikaha was within days of running out of funding. (It was forecast to overspend its 2023-24 budget by $50-$65 million.) Among other things, Simmonds claimed, carers had been using taxpayer-funded disability support money “for massages, overseas travel, pedicures, haircuts” for themselves.
Despite extensive research within the disabled community, no one has admitted to receiving funding for pedicures. One organisation reported approving massages for carers who lift disabled family members daily.
In the uproar that followed, Simmonds was stripped of her portfolio and replaced by Louise Upston.