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Chris Ford: Family caregivers of severely disabled people get justice at last!

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Chris Ford
Chris Ford

 Today, the family caregivers of severely disabled people in New Zealand finally got justice!

The Court of Appeal decision dismissing the Ministry of Health's appeal in what is known as the "Atkinson Case" is a real triumph. At long last, an anomaly in Aotearoa's disability support system will be fixed. Right now, for example, the Health Ministry will pay for non-family caregivers to come in and provide support for high needs disabled people. However, it won't pay family members (even if they are willing and able to) to perform the same task.

Some might well ask "Why should the families of disabled people be paid for caregiving? After all, parents aren't paid usually to look after their non-disabled kids?"

Well, in answer to this, I say two things. 

Firstly, the State pays Paid Parental Leave to new parents for up to 26 weeks at the moment. Also, the state pays single parents who have left their partners to care for their children. Significantly, family caregivers, in the case of disability, tend to be older parents, siblings or other family/whanau members of a severely disabled adult. In many cases, the disabled adult has indicated that they prefer to have their personal cares undertaken with the assistance of a family member. Also, family members in these situations prefer to provide care and support for a loved one in their own home environment to avoid (what I would call) potential pseudo-institutionalisation in places such as rest homes and so-called community homes. And it's often less expensive for the State to provide support to disabled people living in ordinary households than in quasi-institutions. So, I believe it's only right that we should support this group of caregivers (such as my former Alliance comrade-in-arms, Cliff Robinson) to provide this for their severely disabled loved ones. Therefore, if the State did undertake to pay the carers of disabled family members, it would recognise the highly specialised and demanding roles played by this group of people who are often approaching their 50s, 60s or 70s.

Secondly, ACC claimants already have the right to employ family members to deliver personal cares. This judgement has the potential to remove one more inequity between Ministry of Health disability support clients (which include myself) and Accident Compensation disability support claimants. This anomaly exists in many areas including in the provision of equipment (such as wheelchairs) and home support services. If the family care anomaly were removed, then other inequities could be addressed over time.

And the next question some might ask is "Where are we going to get the money in this economic climate, especially when we've got a deficit?"

Well, as I've argued numerous times, the National Government has (despite running deficits) thrown money at "nice to have" things like billions of dollars in tax cuts for the wealthy, chaffeur driven cars for ministers, rugby stadiums (including a particularly loss making one in Dunedin) and bail outs for corporations. Luckily, IHC and other sleepover disability support workers were (thanks to another court decision) able to send the Nats on a guilt trip last year after public support overwhelmingly favoured the awarding of sleepover pay to this group of workers! The Government (conveniently just before the election) gave $100 million to this group to fund their backpay claims. It's simply amazing that the government can find the dosh when it's forced to stump up!

I have to say, though, that the issue of family members providing care for their disabled loved ones is a hot issue, even in the disability community. There are some disability advocates who believe that this commercialises the caregiving relationship and also restricts disabled people's choices to live full, independent lives in the community. However, I am not one of those disabled people who thinks that way. Disabled people should have a full choice of community/own home-based care and support options available to them regardless of age - and this includes the right to access paid family caregivers should they wish to. This Court of Appeal judgement also opens the way for the caregivers of sick and elderly people to be treated in the same way. And the fight for a universal caregiving allowance (as is paid in Australia) is the next battle to be won!

But the Court of Appeal has today opened the door to justice for this very exceptional group of caregivers. Now, we just need to fully value the role that ALL caregivers and support workers play in the life of older, sick and disabled New Zealanders. And it's a battle ALL caregivers can win!



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