Revelations that the Ministry of Health has been forced into a u-turn on cuts to disability services might have attracted attention, but as Chris Ford points out, the sector has long been under attack.
Over Easter, the reality of the now-cancelled cuts to disability support services (DSS) was laid bare in an article by Kirsty Johnston in the Herald on Sunday. Documents obtained under the Official Information Act confirmed the rumours that had been swirling within the disability community for months that the Ministry of Health (MOH) was planning to cut DSS funding for things such as home help and personal care. While I was angered by the confirmation of rumours I'd been hearing for a while, the truth is that this process is nothing new to me and thousands of other disabled New Zealanders. In fact, it's been going on for nearly 30 years now under governments of both political hues.
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Let me give you an example of how disability support has regressed since the health and disability reforms of the Fourth National Government in the mid-1990s. Around that time, while studying at the University of Otago, I began living independently in a flatting situation which meant that I qualified for funding through the then Department of Social Welfare (DSW) to pay for home help support. This enabled me to bring in a support worker for five hours per week for assistance with my washing and other household tasks that I had difficulty with due to my mobility impairment. Without this, I would have struggled on my own or had to rely more on my flatmates.
Then the government's market-driven health and disability reforms kicked in. I remember the assurances that were made in expensive television commercials fronted by journalist Amanda Millar that the new disability support system would be made to fit around the people it served. These sentiments sounded great as they reflected the disability community's desire that the system should become more flexible to suit individual people's needs.
Still, disability advocates expressed fears that disability should not be lumped together with health. At the time we were beginning to emerge from years dominated by the medical model of disability - which held that our impairments were what caused our disability - to the social model of disability, which countered that it was society itself that was actually disabling people with impairments and that these barriers needed removing.
If disability became submerged into health, disability rights activists feared, DSS would become the Cinderella element in any future government's budget, only receiving the odd glass slipper full (if that) of additional funding should neo-liberally driven fiscal circumstances allow. And, as of many of us in the disability community know, that reality has slowly come to pass.
After the full transition of disability support budgets from the old DSW to the health system, I noticed the slide beginning. In 1995, the new gate keeper of the disability system, a Needs Assessment and Service Coordination agency (NASC), suggested that my home help hours be cut from five hours down to three. I remember the assessor telling me that my support worker only signed for three hours work per week and that these hours needed to be re-allocated to other people. I thought fine, okay, I can perform some tasks by myself. As the hours still sounded reasonable, I agreed to the change.
As I've come to learn, if the system can take things away from you or make them difficult to get, it will.
About ten years later I received another request to reduce my hours, this time from three hours down to two. I thought that would be really difficult and protested as such to the NASC assessor but then I relented. And that's where it's stayed for me since - two hours per week of home help. I now manage these hours via Individualised Funding (IF) where, with taxpayer funding, I employ my own support worker on the living wage to perform two hours of housework for me each week. It's already the bare minimum, so I was incredulous to read the now-cancelled proposals from one of the Otago NASCs to drop all home support packages above 1.5 hours per week down to just 1 hour per week in my region.
The reduction in support hours isn't the only damage wrought by the DSS's slide into crisis. Around five years ago, I needed to replace both my ageing manual wheelchair and my mobility scooter. In particular, my scooter was at death's door and had become unsafe to use. I went through the longest waiting time for new wheelchairs that I had ever experienced since coming into the disability system as a kid over 45 years ago. From first assessment to actually acquiring my new power chair and manual chair took 12 months - that's right, almost a bloody year to get my new wheelchairs! During that time, I had to push myself around whenever I went to the Dunedin CBD in my ageing manual wheelchair until my new one arrived. Admittedly, I got fitter in the process but I still expended a lot of energy that I could have used doing other things.
To add insult to injury, during the new MOH-devised assessment I was asked a question which seemed to sum the whole process up for me. From memory, it went something along the lines of 'What would you be doing if you didn't have this wheelchair and/or piece of equipment?' My answer to the assessor (who was great by the way) was "most likely sliding around on my arse!" It encompassed how awful the assessment process has become over time.
Put simply, the recent revelations about the MOH-funded element of disability support are just the tip of the iceberg. While I'm pleased that government ministers have stepped in to stop further damage, I and other users will remain vigilant given that these cuts could still happen by stealth. That's why everyone in the disability community is waiting with bated breath for next month's 'Wellbeing Budget' to see if the coalition government will begin delivering for disabled people too. Longer-term, the government needs to finally have the courage to begin reforming the whole disability system in order to bring together its ACC- and Ministry of Health-funded elements. In this way, it could eventually create one fully-funded system which is purely driven and led by the needs of disabled people and our whanau. I want a system where I and other disabled people can lead flourishing lives as participating citizens, with the full support of the state.
That's the vision that I and other disabled people are prepared to keep fighting for.