Access: Some aspects of New Zealand’s disability history – part one
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Hilary Stace, in reply to
Sweden has a shameful eugenics past that was only revealed in the 1990s. But most countries do. Sterilisation of undesirable people has been widespread everywhere and remnants remain with the debates about the sterilisation of disabled girls and women in many countries.
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Rosemary McDonald, in reply to
Sweden has a shameful eugenics past that was only revealed in the 1990s. But most countries do.
Having a chuckle here, Hilary.
Peter and I spend most of our time tiki touring and meeting up with allsorts on the road.
Fellow travellers/campers from all over the world.
At the moment we are on the East Coast, NI.
We have almost invariably found that it is the overseas travellers from Sweden, Germany, France etc who are more accepting of someone beetling around the camp in a wheelchair.
Most of our fellow Kiwi campers simply blank Peter out, and it is the foreigners who will engage with him.
Go figure.
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Hilary Stace, in reply to
Did you hear that the FFC policy is having a review? Apparently hardly anyone took it up (as we could have told them with all those draconian conditions) and the fund is hugely underspent. Fancy that. The review is not on the Ministry of Health website but Carers NZ know about it and is developing a submission.
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Angela Hart, in reply to
If you want to be part of the review the MOH contact is Christine Petch, she can pass your contact details to the people who will be paid to do the review. CarersNZ have failed to explain this, preferring to channel traffic themselves. They are likely to be the only Carers support agency left standing soon, perhaps because they are compliant.
http://www.odt.co.nz/news/dunedin/320296/carers-society-lose-some-fundingOnce the review is complete, the MOH is responsible for what is released to the public, not the "independent" reviewer(s).
There's a very big reason why few people get FFC, it's because NASCs told them on initial enquiry that they were not eligible, regardless of actual eligibility. Taikura was flooded with enquiries for some weeks after the introduction of FFC but most were told they were ineligible without proper checking of actual status.
We were told we were ineligible but we are. Lots of people will have taken NO for an answer.
There are many other reasons for the low uptake, but basically it's because low uptake is what the MOH wanted, Ryall was scared shitless it would cost bigtime. -
giovanni tiso, in reply to
Sterilisation of undesirable people has been widespread everywhere and remnants remain with the debates about the sterilisation of disabled girls and women in many countries.
Most recently in New Zealand, this.
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Sacha, in reply to
Current Disability Commissioner Paul Gibson was officially lobbying against continued sterilisation of New Zealand women not that long ago.
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Great to hear Robert Martin's biography written by John McRae has finally been published. http://www.craigpotton.co.nz/store/becoming-a-person
In shops now. Can't wait to read it. I read an early draft and used some of Robert's information for earlier Access posts. He's a hero. -
Sacha, in reply to
He's a hero
Indeed. Tried to buy copy online but defeated by website.
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Rosemary McDonald, in reply to
No, Hillary, I had not heard that there was to be a review of FFC....great...but I share Angela Hart's sceptisim....we are talking about the Misery of Health here....and if Carers NZ are representing all of us carers.....abandon ye all hope.
However....Funded Family Care got more than an passing mention in the Court of Appeal in Wellington a couple of weeks ago.
It was the MOH appeal against the Spencer decision.
http://www.radionz.co.nz/news/national/223730/high-court-backs-mother-in-ongoing-family-carer-row
Basically, Spencer challenged the ammendment toe the PHDAct...you know, the one that set up FFC and took away the right to complain about any family carer policy. Ostensibly this was done to save the nation from bankruptcy with all us greedy hitherto unpaid family carers suing the govt.
However, it turns out that there is no way near the tens of thousands of unpaid family carers "crawling out of the woodwork" to be paid, or demanding backpay.
Despite all the publicity surrounding Atkinson and Others v MOH...there is less than a handful of complaints left standing with the Human Rights Commission.
Seems like there was simply NOT tens of thousands of disabled people with high and very high needs who were entirely dependant on UNPAID family carers.
The low uptake of FFC was mentioned....less than 10% of what was budgeted for, one reason suggested that it was still discriminatory. The original MOH estimates of what it would cost to pay family carers...you all remember...the $17-593million...was mentioned as (another) example of just how wrong the MOH got the numbers.
The word 'misrepresented' was used...if I remember rightly.
.However,
Turns out one of the Crown Lawyers had described the legislation as 'wresting control back to the government', ( an "unattractive" argument, according to one of the Appeal Court judges.) "The Courts and Parliament are equal arms of the State", was one phrase that stood out.
All pretty positive sounding stuff....although, actual disability rights (or carer rights for that matter) barely got a mention.
It was a bit of a pissing contest between Crown Law and the rest.
However....it was about disability, it was about those with the HIGHEST need for hands on care and support, it was about the right to choose who provides the the care a disabled person has been assessed as needed.
The can got another kick down the street.
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And just to belabour the point, lest we forget, this is what the Ministry of Health thinks of disabled persons and their families.
" and it takes time for disabled people and their families to take up new options when they come available, we see that routinely with every other new initiative we put in place."
http://www.radionz.co.nz/news/national/242096/disabled-care-pay-policy-%27unworkable%27
That's Jill Lane, from the MOH...perpetuating the myth that we are all slow on the uptake.
If she had half a clue about the lived reality of living with a high needs disability she would know that having to adapt and change with rapidity is par for the course.
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I welcome any history of the experience of the families and carers of disabled people over the timeframe Hilary covers here. Huge change from families being expected to support disabled relatives on the farm to putting them in state institutions.
Next chapter is the transition out of that, and yet to be written by us is the full flowering of our contribution.
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Angela Hart, in reply to
After I had taken considerable trouble to provide detailed and largely negative feedback on the FFC process to the MOH, this is what Jill Lane as their media spokesperson had to say:
"We've had no complaints from these people who have joined the system that it's been difficult or that it's hard for them to continue on with it."
Ms Lane says the ministry is encouraging disabled people to consider the option at every opportunity."I haven't met her but she lost my respect when she released the statement linked to in Rosemary's post.
Now I guess I'd better re read Hilary's post and try to get back on topic, thanks Sacha.
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This is the sort of problem we have with our fragmented system
http://www.stuff.co.nz/manawatu-standard/10689206/Family-seeks-support-providing-for-disabled-son
If this child's condition was the result of an accident, the family would have the vehicle fully funded by ACC, and the mother would not be risking her own health because of needing to lift him. -
Rosemary McDonald, in reply to
It is important to review our history on a regular basis, if only to provide a baseline for comparison with the present, and make predictions about potential futures.
This is what the Ministry of Health is saying today,
''The Ministry of Health is committed to giving people with disabilities and their families more choice, control and flexibility about the disability support services they access, and to improving the access to and the quality of the support available for carers,'' Ms Atkinson said.
http://www.odt.co.nz/news/dunedin/320296/carers-society-lose-some-funding
Perhaps we should take a close look at Toni Atkinson's statement....a rehash of the usual claptrap one will find in all MOH:DSS documents...but particularly ironic in these post PHDAct(2) times, in these post "Putting People First" times, in these "pick a report from the Health and Disability Commission on how shittily disabled people are treated by MOH/ACC Contracted Providers" times.
If anyone associated with high needs disability thinks that conditions/supports/rights/entitlements/ expectations are better today than they were 50 years ago....they need to take another look.
There has been ONE standout cause in the past 15 years...the timeframe that Toni Atkinson references...and that was the Family Carers Case...Atkinson and Others versus the MOH.
Simply...for those with high, very high and complex care needs, for whom care is not an accessory but a necessity...that if the person is over 18 years old they have the right to choose who provides the funded care they have been assessed as needing.
Again....the case was won. Not from a ' we must be seen to be fair to the cripples and their poor, poor families ' basis...but from a Human Rights Act and New Zealand Bill of Rights Act basis.
I.e. The Tribunal, the High Court, the Appeal Court, the High Court (Spencer) all found that the HRA and NZBORA do apply to people with disabilities and their family carers.
In passing the Part 4 ammendment ot the PHDAct...the government was stating, with some emphasis I might add, that these Acts do NOT apply to disabled people...especially those not covered by ACC.
The reality is folks, there was an opportunity with the Family Carers Case for the so called Disability Community to put aside ideological differences and join forces on just this one issue...which anyone could see that the LAW was on oiur side....from a rights based perspective.
But no, we could not get our collective shit together, and we let this government trample all over us all.
Setting those with the HIGHEST care needs back into the Dark Times that Hilary writes about.
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I have been surprised by some people's reactions to the original post that surely NZ wasn't as eugenic as other countries, weren't we nicer?
The reality is that governments govern for those like them (ie basically well-off white able bodied males). Any of our progressive policies such as votes for women, the establishment of the welfare state, pensions, pay equity, the closing of sheltered workshops etc only happened after decades of activism and the activists finally winning enough political power to implement the policies. This power was often short term and the improvements soon rolled back. Our political history is one of brief moments of reform that improved the lives of many followed by long periods when these advances are pulled back, or business as usual.
Occasionally the politicians get it and we had the establishment of ACC because some MPs knew about physical injuries from their war experience (but again that was only for one group of 'respectable' disabled people).
The norm for governments now and historically are policies based on fear of difference and designed to exclude those who are not the powerful elite. Eg in Australia the stolen children and the current anti refugee laws are just examples of politics as usual. In NZ we have constant benefit reforms, much harsher punishment for those who do small benefit fraud while massive corporate fraud goes unchallenged, restricted resources for disabled kids to access education and of course policies such as Funded Family Care. They are all about limiting and constraining those labelled 'other'.
Eugenic attitudes are always just below the surface. That is why we need to know our history and remain vigilant.
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Angela Hart, in reply to
and further to that, eugenics occurring in practice with some families visiting from Australia in order to sterilise children, which remains permissible in this country.
However, population changes mean that this treatment of the disabled community as "other" has become far more difficult. If we were more unified, a quarter of the population would be difficult to ignore- or mistreat, and we cannot be hidden or silenced easily.
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the HIGHEST care needs
As I've said before, I’d caution against that assumption. It certainly doesn’t help collective action.
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Angela Hart, in reply to
What assumption Sacha?
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Sacha, in reply to
That there are not other groups of disabled people with high needs. Discussed on a previous thread.
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Angela Hart, in reply to
Perhaps this is a discussion to pursue another time. The fact is that sometimes we work against each other and that is unhelpful, it demeans all of us.
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Sacha, in reply to
That's what I'm getting at, yes.
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Marc C, in reply to
Well said, you are so right. We have governments follow various political and other agendas, and when it comes to COSTS, most governments will not shy away from rolling back social and health policy achievements, in order to “balance the books”. They may at the same time offer tax cuts or other perks for groups they like to look after, who tend to be the workers and taxpayers, so often quoted (“hard working New Zealanders”).
All achievements that were made in disabled support, health and welfare services, are always at risk, of being rolled back again, and nothing we have has been achieved without a fight. Sadly too many tend to become complacent, and take their rights and benefits for granted, and even if gradual cutting back occurs, most are too scared or again complacent, to not dare “rock the boat” and stand up and fight.
And then so many are just focused on their interests, and forget they may also be in another situation one day. So they do not act when others are affected by cut backs and lack of support and appreciation.
I fear we are heading right there again, while so many do not quite realise it. This government we have gives to some with one hand, and takes from others with the other hand. It pays to learn from history, and that is where this post is so valuable.
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Interview with Robert Martin on Radio NZ this morning (after 10) talking about his biography Becoming a Person which includes his story of institutionalisation.
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Here is link to Robert's interview with Kathryn Ryan http://www.radionz.co.nz/national/programmes/ninetonoon/audio/20157519/new-zealand's-candidate-for-the-united-nations-committee-on-the-rights-of-persons-with-disabilities-for-the-2016-election-robert-martin
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Here's one of the major current problems we have in our health system, brought up in a genuine consultation process by some of the people affected:
http://www.radionz.co.nz/news/regional/259586/disabled-services-'left-out'-of-dhb-plan
Some health boards do have managers with responsibility for services for people with disabilities, but actual change at the nursing stations is extremely slow and not reliable. This article suggests that the hospital should provide sufficient support so that any disabled person admitted does not have to bring their own caregiver(s). I don't agree with that as an across the board solution as it doesn't work for the most severely disabled, and for some of those with specialised communication. But the point is that in general, hospitals do not cater for unwell people who happen to also have a disability, and they should.
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