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A plea for fair disability support

Media Release From Philip Patston

20 December 2010

I back 100% NZ's Chief Human Rights Commissioner Rosslyn Noonan call to the Ministry of Health to accept the decision of the High Court to uphold the Human Rights Tribunal's landmark ruling in favour of a group of parents who have been battling to be paid to care for their significantly disabled adult children.

The Government now has 30 days in which to decide whether or not to appeal the decision yet again.

I think it is crucial that the Minister of Health and officials, whose role it is to make this decision, consider how they approach the task. They have two options:

1. To depersonalise disabled people and their families by seeing us as "them", "those people" and "afflicted" by a circumstance of bad luck, vulnerability and misfortune.

2. To accept that disability, dysfunction and the unique experience that ensues is a possibility for everyone, including themselves.

If our leaders and decision-makers act with ignorance, arrogance and denial that they too could be in the position one day of needing support for themselves or their children, they will choose to appeal the decision again.

They will try to perpetuate a policy that will deny themselves choice and human rights – when they have a stroke or terminal illness, or a child or grandchild diagnosed with a permanent impairment. They will fail to consider, personally, whether they would appreciate the choice to employ someone who knows, cares and loves them or their child to provide that support; or whether they would prefer to employ a stranger to perform intimate care functions.

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If, on the other hand, our leaders and decision-makers act with awareness, humility and acceptance that disability is a potential and 99% inevitable experience for them and everyone, at some point or other, even temporarily, they will choose to accept the decision this time around.

Rather than fearing the fiscal consequences, they will realise the economic and social sustainability of investing in a well-supported population, of which they are a part. They will understand that managing disability support well is like managing a business well – you need the right people for the job at the right time.

Sometimes that's family; sometimes it's not.

They will begin a conversation (which, at times, may be difficult) with people like myself who better understand the complex dynamic of disability support. Together, after some time of open, honest dialogue, we will come to a shared understanding of how family and paid support relationships can intersect.

We will realise that the unique experience of disability can sometimes be fuzzy, unclear, awkward, uncomfortable, strange, unfair, wonderful, rewarding and amazing. We will see that paying family members is the economic manifestation of this reality.

So I say to Hon Tony Ryall, Minister of Health; Andrew Bridgman, Acting Director-General and Acting Chief Executive, Ministry of Health; Crown prosecutor Deirdre Elsmore; and anyone else involved in this decision — please don't separate yourselves from our reality. Understand that one day, it could be yours

Perhaps I should only speak for myself. I want a world where everyone feels empowered to be supported by the right person at the right time. I want safeguards in place so that our supporters are supported; I don't want us to take family for granted by expecting they will martyr themselves, unpaid, for our benefit.

However I want stringent systems to monitor paid family support relationships, so that when they work they are applauded and when they need to be changed, they can be changed to everyone's advantage. I don't want people feeling "locked in" to family support, but right now I know people who are feeling "locked out" of choice.

Above all, know that we want this for everyone, not just us. We want this to create a better society for you, as well as us.


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