Access: Murder – it’s not OK.
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Well written Hilary, it's so easy to automatically side with a stressed parent rather than looking deeper. Our autistic citizens and others in society with mental and physical challenges deserve better.
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I focus on autism but disabled people with so called 'complex needs' usually have lots of labels, and these can change over time. The stresses remain the same.
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mark taslov, in reply to
so they become known as real people, with interests and personalities.
Some great suggestions outlined here Hilary, and very well put.
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Thanks Hilary - the historical account in your post is uplifting in the sense that a precious life tragically and needlessly lost at least spurned action in NZ - but soul destroying at the same time, as if anything, it seems to me we have gone backwards in both policy and circumstance.
So many children and their caregivers across a spectrum of circumstances in NZ, waiting, waiting, waiting in desperation for a government that addresses their needs. What you suggest in your final paragraph is of course a win-win solution for everyone, both the able and the disabled living and working in the sector. Everyone gets lifted up. What is wrong with an executive/Cabinet that cannot see that?
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A statement from the Autistic Collective.
NO EXCUSING THE MURDER OF AUTISTICS!
Ruby Knox, a young autistic woman, was murdered last year by Donella Knox, her own mother, and recently her supporters have been asking for Donella’s early release on ‘compassionate’ grounds.
The Autistic Collective however, feel that the central issue being lost sight of here is that a young woman was murdered, and her murder is being justified because she was autistic.
When a disabled person is murdered, much sympathy is all too often expressed for the murderer, while the victim is seen as ‘better off dead’. In no other case of murder is this so.
This sends the message that our lives are somehow worth less than others, and that our deaths are to be regarded as ‘mercy killings’. That we might have difficulties, even severe ones, and yet still find life worth living, never seems to occur to others.
And these killings are, unfortunately, not as uncommon as the judge in this case seems to think – certainly not ‘once in a lifetime’.
We autistics struggle with life, as do those with other disabilities, but we do not ‘make’ our caregivers kill us – they make that choice of their own accord. Crisis is not an excuse for murder.
We in the autistic and disabled communities are however in agreement with Donella Knox’s supporters on one thing – there needs to be more services, and far more and better training for those delivering services to those with disabilities. This is especially true with autistics, as our needs often differ even from other disabled, due to our neurology.
The position of the Autistic Collective is that there should be far more support available, so that we are not forced to stay with family members or other caregivers when the relationship turns toxic, or when they have threatened violence towards us.
Penni Winter for the Autistic Collective
The Autistic Collective is a group of autistic advocates who have joined together in order to become more effective in our advocacy.
We can be contacted at info@autisticcollectivenz.org
Our website can be found at www.autisticcollectivenz.org -
Coincidentally, my friend Robyn Hunt wrote this for the Spin Off http://thespinoff.co.nz/society/09-02-2017/on-donella-knox-her-disabled-daughter-and-the-so-called-mercy-killing/
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Ministry of Health sees no responsibility to improve services!
http://www.stuff.co.nz/national/health/89179500/Autism-NZ-calls-for-respite-care-overhaul-after-Donella-Knox-case -
Sacha, in reply to
Ministry disability support services group manager Toni Atkinson said there were many autistic people who did not need disability support.
There was no need to improve training for carers, and autism support was not under-resourced, she said.
What a disgusting attitude. Families and advocates must just be making it all up, eh.
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Nice piece Hilary.
To add to what you pointed out about disabled people across the whole range of impairment being at greatly increased risk, the NZ post-census Disability Survey points out that most disabled people have two or more impairments, and one disabled person in 3 has unmet health needs- which means that many disabled people don't get support services, or pretty inadequate amounts of it. International research about disability, violence and abuse shows a complex mix of invisibility, insufficient inadequate services, denial of basic human rights and attitudinal black holes.
This isn't just about services though, it's as much about how this always runs in the media,(breathless paeans about 'mercy killings) or in the courts where judges and lawyers strut their inimical stuff . Both frankly are revolting and crappy.Ruby Knox's killing (see, I choose to name the victim, not the killer) and the killings of all those other disabled people deserve better than simply focussing on service provision though totes agree it's important too. -
One of Greg O'Connor's first tweets after setting up his @GregOhariu twitter account was about the Knox case. It will be good to have him as a politician who is informed about the issues from personal and professional experience. Worth watching.
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william blake, in reply to
Thanks Hilary, this needs to be said as it is true.
Steven the obvious mitigating factor is the failure of support for the Mother but then in mitigation of the support services, we have a limit on resources because of free market ideas of health care floating around at government level. The (Neo) liberal democratic hegemony that we have is as hard to excuse as it is to get rid of, and this is the real trickle down; to this kind of cruel tragedy. That said, simply returning to a more social democratic form of government won’t get rid of predjudice but it might remove some of the economic constraints of helping people with the greatest need.
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Rosemary McDonald, in reply to
Ministry of Health sees no responsibility to improve services!
Absolutely typical, and as Sacha says...disgusting.
Ministry disability support services group manager Toni Atkinson said there were many autistic people who did not need disability support.
There was no need to improve training for carers, and autism support was not under-resourced, she said.
"The ministry funds an organisation, Te Pou, to provide disability and workforce training. Other support is available based on people's disability-related needs which varies for each individual."
We should take a look at TePou...meet their grinning team here.
Atkinson goes on...
Atkinson did not know how many respite carers worked in Marlborough, she said.
She would not comment directly on the amount of support Donella Knox received, but said the ministry was always working to improve how it supported disabled people.
"The ministry has recently invested in a new carer matching/carer learning service. This gives people across the country access to an online database of carers."
Well...the bit about the ministry working to improve how it supports disabled people is total bullshit for a start...and when I read that yesterday (here at the Kaitaia Library using their Aotearoa Peoples Network) I felt physically ill. I was going to comment here yesterday, but had to delete what I had wrote....
So far I have not had the pleasure of meeting Toni Atkinson, although I have spoken with her on the phone. She lied on that occasion too.
Back in the good old days the Misery used to host Consumer Forums in major centres around the rohe. These were a perfect opportunity for those living with disability to take their most pressing issues to those at the top in DSS. These were not celebratory occasions, and once the preliminaries of showing how much was spent on what by DSS were over attendees were free to give voice to their concerns.
There was anger, and there were tears of frustration and despair.
The last one we attended was in Dunedin in 2013...and was fronted by Barbara Crawford. Barbara Crawford was most put out when our table's biggest issue was the lack of sufficient supplies to manage the bowel and bladder dysunction issues common to those with spinal impairment. Tried to explain that having to use a sterile, prepackaged catheter labeled "SINGLE USE ONLY" a dozen times because only 10 are supplied per month was false economy in terms of resultant bladder and kidney infections...went down like a cup of cold sick it did...talking about specific (and obviously 'icky') disability issues.
Anyway...it seems there are no more Consumer Forums...just the Consumer Consortiums.
Which are clearly doing a less than awesome job in conveying to the Misery just how shit their service is. I guess if you are representing an advocacy group which relies on the Miserly for funding your ability to do actual advocacy is limited. Such is the system...and they call this consultation.
And then we have the very grand sounding Disability Sector Strategic Reference Group whose function it seems is to provide...
....an inclusive forum where key stakeholders can discuss strategic disability issues and identify opportunities for improvement, with the aim of informing the Ministry’s strategic direction for, and purchasing of, disability support services.
The minutes of their last meeting are here, if reading the same old drivel floats your boat...
If the the Ministry of Health has this site monitored... please take note...
The Ministry of Health Disability Support Services is a blight on the lives of disabled New Zealanders. You seem to think you are doing a good job.
You're not. You are doing an absolutely appallingly bad job. You could not have done a worse job if you'd tried.
Big fail.
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Rosemary McDonald, in reply to
I totally get what you are pointing out. That killing a disabled person is no less acceptable than killing an infant, because they require there caregivers time and energy.
But it’s also important to consider the mitigating factors in the mental health of the murderer in all sentences. Like when someone kills a three year old, rather than giving oxygen to opinion people who write angry blogs about public lynchings, it might be better to look at the mitigating factors during the sentencing process, ( which you are doing ) then create sentences that help society to heal holistically.
Thank you Steven for putting this into words.
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Good. The movement towards an inquiry into historic abuse is gathering steam. I think I wrote about it a couple of years ago as it is one of my ongoing research interests - those disabled children sent away from their families and those disabled people in the back rooms of the institutions need justice even if they are no longer around to tell their stories. Some good journalists helping and some powerful people getting on board. This will have to become an election issue. http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11799369
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Angela Hart, in reply to
This will have to become an election issue.
It should.
Establishing the causes and the manners of enablement of historic abuses in state run institutions should allow us to avoid those causes and conditions in the present and the future. We now have state funded institutions rather than state run ones, but the state must still be held to account for them. Residential and respite care for disabled people badly needs looking at. Our most vulnerable disabled people, those who cannot readily communicate, are terribly at risk in these places. We need actions that allow us to have confidence in the support systems available, and we need support systems that meet the actual needs, including people's right to live their lives in their own ways. -
The language about autism and the diagnosis itself in this report of the Dunedin murder are both worrying and probably inaccurate. People with autism do not become premeditated killers. Similarly with school shooters etc – it is becoming acceptable to ascribe autism. But I would suspect an alternative condition.
The very few documented cases of killing by autistic people (usually of care givers) happens during extreme behavioural meltdowns. Not premeditated.
https://www.odt.co.nz/news/dunedin/court-news/autistic-spectrum-disorder-recognised
This public use of a diagnosis of autism worries me. -
Sacha, in reply to
People with autism do not become premeditated killers.
No shit. #grrrr
Judge Nicholas Davidson said Merritt’s disorder had impacted his life and was connected to the murder of Ms Ross.
"References to the mild end of the ASD spectrum shouldn’t, in my view, trivialise your impairment," he said.
"You do suffer from a mental disorder as the law understands it. It’s part of your make-up and the reason you killed Ms Ross."
How do we ensure judges like this get educated? Probably good intent but woefully ignorant.
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Hilary Stace, in reply to
Dunedin has recently hosted a really good research project about intellectual disability and the law, with an aim of educating the judiciary. Just a pity that it didn't appear to include autism, if this report is any indication.
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When I was at high school, my folks thought it was a good idea at the time to tiger-parent a quasi-autistic kid to success, partly because it worked for my siblings, and partly because ASD was still poorly understood in those days. They've since seen the error of their ways, but there's little they can do now to fix it.
Us autistics can do without the victim-blaming dressed up as motivational snake oil. There's just no substitute for some kind of new New Deal approach, which we're not likely to get under the existing cost-of-everything-value-of-nothing dogma.
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Hilary.
Your original post pretty much says it all and I'm fairly sure those who commented are still of the same mind.
So, I'll just do an update and link to these....
https://www.radionz.co.nz/national/programmes/morningreport/audio/2018654266/warning-of-further-deaths-without-caregiver-boosthttps://www.radionz.co.nz/news/national/362093/report-findings-after-ruby-knox-s-death-released
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12091213
But I will quote Dr Rosemary Marks...
"I remind you that governments allocate resources not only according to needs, but also with an eye on what the public wants.
"If people and lobbyists loudly demand more roads – that is what they will get.
"Until as a society we learn to value all our citizens including those with disability, our leaders will not consider they have a mandate to prioritise spending taxpayers' money on improving services for people with disability over the many other demands facing them.
"We need to learn to include all members of the community. An inclusive society is a just society. We need to learn not just to tolerate difference but to celebrate difference."
PS...has Marks' report been released to the public?
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Sacha, in reply to
Until as a society we learn to value all our citizens including those with disability
Which will only happen when leaders invest in that education process. Show us the money.
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Thanks Rosemary and Sacha. I can't find the full report - maybe it hasn't been publicly released yet. A friend of mine also has an adult with a large care package but says it is like chocolate. You might have the money for high quality chocolate but there are no specialty chocolate shops in the region where you live. So if you want chocolate you have no choice but to go with whatever is available. (Only she puts it more colourfully than that).
And then be told that you don't deserve good chocolate anyway as you are second class humans. -
Sacha, in reply to
I can't find the full report
Certainly not on the DHB's website, but then I guess it may have too much personal detail to be released in full anyway.
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Rosemary McDonald, in reply to
You might have the money for high quality chocolate but there are no specialty chocolate shops in the region where you live.
Marks suggests an early warning score system as a measure to prevent further deaths...
Another preventative solution could be an early warning score system, that collated information from hospitals, GPs, disability support services, school attendance records, and Oranga Tamariki records.
The system would record any increase in GP visits or phone calls, a change of primary care provider, an increase in emergency department visits, reduced use of funded supports, a decrease in attendance at school or adult day school, or escalating behaviour in the individual or their caregiver.
...which is an excellent idea providing "reduced use of supports" is carefully examined. To be seen as a risk factor of harm when the available funded supports are not fit for purpose would be totally wrong.
Already 'declined service' (because of unsuitability or inappropriateness) appears on MOH;DSS paperwork to promote the false narrative that they did try really really hard to satisfy the eligible person's requests....but the person or their whanau were just too damn picky.
Increase in GP or Emergency Department visits also is not necessarily an indication that the person is at risk of harm from the family carer...it could mean that the GP and/or the hospital had failed to diagnose and treat promptly. As what happened with Ruby.
Those bastards at the Misery will never admit their failures.
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Sacha, in reply to
an early warning score system, that collated information from hospitals, GPs, disability support services, school attendance records, and Oranga Tamariki records
Inter-departmental information sharing has that promise as well as lots of risks. The ' social investment' approach relies on it.
'declined service'
The Health and Disability Commission has tried for ages to get services _not_ supplied added to their remit. Governments of all stripes have refused, so agencies can't be held accountable for access rationing.
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