Access by Various artists

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Paying Family Carers - What was all the fuss about?

by Rosemary McDonald

Peter and I went out fishing on ANZAC day.

We used to be regulars on this particular west coast charter boat, ferreting away a few dollars so we could get out maybe half a dozen times a year. The trips usually paid for themselves in terms of fish caught,  but the major benefit was always Peter being able to go out and participate in an activity he loves, with other fishermen... just being one of the boys.  We’d come home tired and wet and blood splattered... all good Kiwi stuff.

Anyway, it had been a while since our last trip.

We had talked about the Family Carers Case as part of the normal ‘waiting for a bite’ chat that goes on, and our absence from the boat had been explained as due to lack of $$$. So, when the skipper’s wife saw us on the wharf that afternoon, her first words were, “You guys will be so pleased now Rosemary can get paid!”

We took (another) deep breath and tried to give a précis of what happened in Parliament on the 17th of May 2013.

We explained how maliciously difficult the government had made it to actually access the much-publicised Funded Family Care scheme. We explained how only a handful of people had successfully applied.

When we told her that spouses and partners were still unable to be paid,   she said “Oh,  so you’re going to have to take another case to the Human Rights?”  I had to walk away at this point. Peter explained about section 70E of the new Act:

On and after the commencement of this Part, no complaint based in whole or in part on a specified allegation may be made to the Human Rights Commission, and no proceedings based in whole or in part on a specified allegation may be commenced or continued in any court or tribunal.

So, this is where we’re at after well over a decade of discussions, mediation, five weeks of Human Rights Review Tribunal hearing, two weeks in the High Court and just over a week in the Appeal Court.

In case you missed the news... we bloody well won.

However, it’s not even a case of being back to square one. It’s worse.

Describing the effect this had on Peter and me is personally very difficult. Rights were fought for. Rights were casually set aside. The right to fight for our rights was equally as casually taken away.

It feels like I have no right even to state our particular case, even in this supposedly supportive environment.

So, I’ll take us all back to 2008. I simply could not put the case any better than this reporter:

“I'd asked what he (Stuart Burnett) had made of Ministry of Health officials at a hearing in Auckland of the Human Rights Review Tribunal, officials who had used words such as "frameworks" and "initiatives" and who had talked about the strategies and supports in place which benefit the lives of disabled people.”

After fifteen months of deliberation, the Tribunal released its decision.  Required reading for everyone interested in this issue. It is written in plain English and it covers ALL the relevant bases.

Of significant public interest at the time was the assertion from the Crown that simply removing the prohibition against paying family carers would cost $17 to $593 million. That somewhere out there were 30,000 New Zealanders with severe disabilities requiring a high level of care that were not known to the NASC agencies. That the currently unpaid family carers of the unknown 30,000 severely disabled New Zealanders would come out of the woodwork with their demands to now be paid. Again, let me pass you over to one better qualified to comment.

In his evidence to the Tribunal, Brian Easton (to call Brian Easton an ‘economist’ would be like calling U2 a ‘boy band’) expressed somewhat wry concern at ‘the numbers’ and the resultant costings presented by the Ministry:

“It is not necessary for this case to reconcile the tabulations for the purposes of this claim. Suppose the Ministry of Health is failing to identify large numbers who are entitled to its support services. That is clearly a matter of public policy concern, but it is not the focus of the claim which is about those who are in existing receipt of support.

In the event that the Tribunal’s decision were to encourage others in need to apply for their support entitlements, then while this may be fiscally expensive, this reflects neither a change in the policy framework nor the Tribunal’s decision but a reduction in the failure of delivery coverage within the framework.” (Boldface mine)

That’s kind of what claimant Stuart Burnett said:

Everything in the garden is perfect.  Yeah, right!”

Catherine Masters followed this case as the Crown took it to the High Court.

“She (Martha Coleman, Crown Lawyer) said the system was a good one and key services existed to fill the gaps.

Outside court, Cliff Robinson had said how rosy they make the system sound, to which Peter Humphreys had laughed ironically and said "yeah, I want some of that".”

Hopefully, dear reader, you will have taken the time to read the links. I hope I have made it clear that while this case was predominately about discrimination, which was proven; it was almost equally about highlighting serious flaws in MOH disability support system for those with high, very high and complex care needs.

What do Peter and I feel about this? What this guy says, only with more swearing and a river of tears.

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