Reckoning with our reality: Why these funding conversations are long overdue

My Enabling Good Lives personal budget has made an incredible difference in my life. I support a vision where community and natural supports are fully accessible to all disabled people, and where flexible budgets supplement our barrier-free world. While the recent changes made by the coalition Government have led some people to question if this vision is now under threat, they have also brought some important and unresolved issues into the public discourse.

First of all, it’s well overdue that the rates, conditions and processes surrounding carer support were properly interrogated. Carer support funding was introduced following the tragic 1997 case in which Janine Albury-Thomson murdered her autistic daughter and defended herself by saying she did not have respite support. Unfortunately, that funding is costed at an $80 contribution per 24 hours, working out at $3.33 an hour, for what needs to be a skilled and trustworthy person taking responsibility for our taonga. As someone who has done respite support, I know that not many people are willing or able to accommodate such a meagre rate, and the barriers can be compounded in rural settings. Given this reality, we seem to have accepted the injustice of carers being offered haircuts and beauty treatments as a consolation prize for going without respite support.

Clearly, there are problems with therapeutic spending as an alternative to having respite support when it is needed. I am upset that disabled people are being talked about as if we are so uniquely horrible and stressful that our carers need taxpayer funded pedicures to survive us. Optically, it's not great when some disabled people lack the support to meet their basic needs, while others can use their allocation from the same pool of funding on what some people would consider to be luxuries. The main issue at hand is that there are not enough respite supports to meet the basic needs of all carers. To remedy this, we should pressure the government to pay respite supports at established pay equity rates, with reimbursement for incurred expenses, so that more people will make themselves available for this mahi.

The changes in funding flexibility have also forced us to reckon with the practice of exchanging koha for support. I have always had a lot of disabled friends, mostly because of the ‘me being disabled part’, and some non-disabled friends. It pains me to admit I have been on both sides of these relationships becoming financially incentivised. Friends are recast as volunteers once recognition is on offer. Something that we do for a fellow member of our community becomes a job that requires payment when there are funds available for it. In my experience, natural reciprocity was diminished when I came bearing a voucher, resulting in expectations that a situation would become tipped in my favour. I have been on the other side of such arrangements too. I now recognise that accepting free stuff for being a friend implies that I consider my disabled friends who have a personal budget to be different to my other friends.

Since March 18, disabled people with a personal budget no longer need to contend with the spoken, unspoken, or self-imposed assumption that the money for our support be used to lubricate normal familial and social relationships, as the option for gifting has been removed from the purchasing rules. Neither commercialising relationships nor giving our supporters gifts instead of upholding their hard-won pay equity rates will solve our wider problem of attitudinal and environmental barriers restricting our opportunities for equal participation. The practice of exchanging gifts for support necessarily creates one of two problems: if we are providing gifts in exchange for unpaid support, it risks casting us as a burden rather than an interdependent part of the community. However, if we’re providing gifts when someone is actually working, then we are propping up a system that refuses to pay people what they are worth. My hope is that the end of gifting will prompt important discussions about boundaries between work and relationships, and maybe it will go some way towards improving the conditions of both.

I write these opinions as a healthy well educated Pākehā cis-het woman with support needs that fluctuate but are now-that-I-am-diagnosed at the less expensive end of the spectrum. There are things I do not know and experiences I have not had. However, I am drawing attention to ways the March 18 announcement could contribute to the trajectory of tāngata whaikaha, disabled people, whānau and families living the Enabling Good Lives dream of a non-disabling society in the future.

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