First, a quick and dirty on the current state of disability support in New Zealand. Disabled people are able to access the following types of personal care:
- Live-in residential facilities
- Support workers from an agency (e.g. Spectrum Care) visit home to provide care
- Individualised funding, where the disabled person is bulk-funded to employ their own staff to provide personal support
I use individualised funding, and have a roster of fabulous support workers who help me live my best life. Unfortunately, one of the rules of individualised funding is that you can’t use it to pay immediate family members (e.g. father, mother, siblings, spouse) who live in the same house as you. This has led to a protracted legal battle, that the National government settled in a most unsatisfactory way a few years ago, whereby the parents of disabled children are able to apply to be paid the minimum wage at a capped number of hours per week. How do you spell stingey?
There have been a number of stories decrying this shitty policy of late, and I’d like to add my voice to the chorus.
Sometimes, it’s difficult finding staff who fit into your family dynamic. This summer, I went 3 months without support as I searched high and low for the right person. During this time, my wife helped me get dressed, get ready for work, cooked all the meals, and performed other elements of personal care that I would normally pay someone to help me with. I think it’s brutally unfair that I can’t – in a small way – acknowledge her work financially, and believe this Family Funded Care policy needs urgent overhaul by the new Labour government to enable this to happen.
It’s not even going to cost the government any more money. I have a fixed annual budget that I can spend on support, so it would simply be about paying one person – in this case, my wife – instead of someone else. The fact that I can’t do this right now is crazy, and puts an unreasonable and unnecessary level of stress on my relationship during the time that I can’t find adequate staff. Being able to pay my wife for this extra work would not make me feel amazing, but it would certainly feel a lot better than when she works for free.