The decision to downsize Whaikaha and strip it of its responsibility for delivering support services has outraged disabled people, who fought for decades for a ministry of their own, writes Robyn Hunt.
The downsizing of Whaikaha to a smaller policy advice, advocacy, education and monitoring stand-alone ministry, with disability support service being transferred to the Ministry of Social Development, has stunned, outraged and deeply distressed disabled people, families and the support community.
The announcement was made by disability issues minister Louise Upston late last week, following a review that said the ministry was “ill-prepared” to deliver disability support services when it was established in 2022.
Disabled people and their families experienced high levels of anxiety following cuts to respite support and equipment services in March. This decision creates more stress and disempowerment for people who already live with uncertainty. The minister’s assurance over support and consultation have not lessened their confusion and concern.
It is also not clear if Whaikaha’s Treaty work and Māori disability work will stand. This could raise human rights considerations.
Over 30 years ago another national government switched the provision of most disability support services from the then Department of Social Welfare to the Department of Health. The difference then was that there was consultation, even if no one listened to or took account of the vehement opposition. At that time the 1975 Disabled Persons Community Welfare Act was repealed, and disabled people lost some entitlements.
For many years disabled people have fought for a ministry of our own. We wanted a ministry that would enable disabled people to influence policy and offer more of a stake in service provision. There is a strong feeling that Whaikaha has been shafted. No one identifying as disabled was on the review panel. There was no consultation with disabled people. As one seasoned disabled researcher says, “The review dismembers decades of disabled people’s work and advocacy.”
“Nothing about us without us” rings hollow here.
Disabled people are also frustrated when some media outlets are talking to service providers before speaking to the service users. Providers do have a stake in the change, especially as their funding for support will not increase, but it’s disabled people and their families and supporters who are at the coalface, who live with limitation and impairment and encounter ableism every day. Disabled people have agency and are not simply objects of care. They are challenging the decisions, and the lack of consultation.
The issue is not so much budget overruns as chronic underfunding over many decades of disability support and services. Disabled people have been at the mercy of successive governments and the bureaucracy, a political football in a system in which we have little real representation, a system that is designed around limitation, rather than potential. This results in a lack of trust in a punitive rather than an enabling system.
Disabled people have concerns that the new, smaller ministry will lack teeth and influence, which was the fate of the much-heralded Ministry for Women in the early 90s. Will the new, smaller ministry have the power and capacity to progress the gnarly issues facing us, such as our woefully outdated and inadequate accessibility standards and laws?
Disabled people worry that there will be less opportunity for us to work on our own issues. Our opportunities, voice and representation will be diminished as services are formulated and delivered from a place where we have less influence, where the priorities of a large organisation dealing with a multiplicity of interests do not adequately represent ours. As one disabled person said on social media, “Disabled people deserve to lead meaningful and dignified lives. They deserve a fully-fledged ministry that serves and advocates for them.” Disabled people want a strong voice that is heard, and a meaningful place of our own.
There is also concern over the sidelining of the new model of disability support, Enabling Good Lives, which promised more flexibility and control over allocated funding for some disabled people in some parts of Aotearoa.
The minister in her presentation talked about a “systems” problem. But systems don’t exist in a vacuum. They reflect societal norms and affect people. The new system will include sanctions, another source of anxiety and a complication in a system that is already complex, serving a complex community. The recent report from the abuse in care inquiry clearly showed the terrible damage toxic systems cause.
The government intends to reinstate NASC, Needs Assessment and Service Coordination. Eligibility and provision are complex, and although services were supposedly driven by need, the assessment and service coordination became budget driven rather than needs driven. It was complex and not popular.
That the documents related to this decision are not yet available in alternative formats is significant, although the centrality of the NZ Sign Language interpreter in the minister’s presentation was notable.
Our numbers are increasing. There are just over a million disabled people in Aotearoa. We are an ageing population with higher rates of impairment. It’s worth noting that anyone can become one of us at any time.