Back to the future for disability funding

At a community meeting in 1991, hosted by the Crippled Children’s Society, disabled people were being informed of how our support services would be changing. The National Government was restructuring the four regional health authorities, and disability support services were moving from the Department of Social Welfare - now the Ministry of Social Development (MSD) - to the Ministry of Health (MOH). Sensing what was to come, I stood up and shouted, ‘But we’re not sick!’

Thirty years later, in 2021, Health Minister Andrew Little and Social Development Minister Carmel Sepuloni announced the formation of Whaikaha - The Ministry of Disabled People. At the time, Little boldly declared, “We’ve heard and responded to their desire to lift disability support out of the health system, which is why we’re establishing a new Ministry for Disabled People to deliver support for all disabled people.” 

From MSD to MOH, from MOH to Whaikaha. Progress was being made. Or so we thought.

Last week’s announcement that Whaikaha’s function was being reduced and disability support services would be transferred to MSD felt like going back to the future. Given that funding disability support was moved out of MSD in the 1990s, presumably because of their failure to meet the needs of our people, one wonders what's changed so dramatically that we are considering repeating the mistakes of 30 years ago.

Under the old system, when I first got support to assist me with household tasks, I was offered support through a disability support agency. I found it was far from enabling because I needed to be home when they came. Often they would not turn up at the agreed time and I would have to keep rearranging my days!

Knowing how inflexible and unresponsive our welfare system is to the needs of individuals, I hold grave fears as to how MSD will deal with funding our support. Having had interactions with WINZ over the years I know how disabling some of these experiences have been. We are scrutinised and questioned over what we need, and continually justifying why we need a particular brand of equipment that may not be the cheapest on the market. The cheapest brand may not be suitable for our needs.

Since Whaikaha began stewarding disability support budgets, there has been greater understanding of disabled people’s needs, and a greater range of support options available to us. Over the last few years, disability support funding has become more flexible, and this has meant many of us finally had our support needs met so we can live with dignity and have an ordinary life.

Thanks to the flexibility of Whaikaha-led support funding, I now choose my own support workers and they fit in with me, not the other way around. This has opened up a whole new world of possibilities for me. But following this announcement, I now fear that support like home help will be less flexible, in order for our funding to stay within broad and ‘one-size-fits-all’ budgets.

This reduction in funding flexibility has, in part, been driven by accusations that Whaikaha has been living beyond its means. However, disability support services have always suffered from historical under-investment, no matter what government agency manages it. It was galling to hear part of the rationale for Whaikaha’s downsizing was them being blamed for the current financial mess, as though it was the fault of this new ministry alone.

Wisdom looks to the past to understand the future. History has shown us that non-disability-led government agencies manage disability funding in ways that disable us, serving as reminders of mistakes that we must avoid repeating. We need funding for disability support services to stay with our own ministry - Whaikaha. We deserve to be in control and have choice as to how our funding is used so we can participate fully and on an equal basis with non-disabled people in Aotearoa New Zealand.

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