Funded Family Care: Why this needs to happen

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:

  1. Live-in residential facilities
  2. Support workers from an agency (e.g. Spectrum Care) visit home to provide care
  3. 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.

2 comments

  1. Hi Red. I get it.

    My husband is my carer & he also works full time. We relocated to be near family for support & were (mis)informed several times that my mother could be paid to provide respite care. Of course this proved incorrect as we found after a lot of phone calls.

    In any case respite care payments can’t be used to cover care when my husband needs to be away from home for work. We’ve (rather, he has) made the choice to limit his career by not travelling.

    We had private care in the past through an agency. This was in Australia, but omg people don’t realise how vulnerable disabled people are & having strangers in their homes – well, *anyone* can apply to work as a carer. It could have been a lot worse but it was still very bad.

    You’ll understand though if I say I’m very cautious about having anyone I don’t know helping me now.

    So we limp along on our own, my parents still help us, we no longer apply for funding to assist us & the stress does have an impact. But it’s less stressful than trying to participate in a system that doesn’t help us.

    Overall, the public benefit of paying for care is greater than the amount care would cost.

    I’m sorry for your struggles, I hope in the meantime you can find the right person to assist but it makes no sense that in the meantime you can’t use the same funding to reimburse any family member (in this case your wife) for doing what a non-family member would be paid to do.

    Best wishes.

    Like

    • Thanks so much for taking the time to reply. I totally get the ‘opting out of the system’ thing, and isn’t that symptomatic of it all? That we’d rather not even apply for what we’re entitled to because it’s just so miserable? Best wishes to you too 🙂

      Like

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