Access: Fighting seclusion with collective activism
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Psychiatrists alarmed by autism meltdowns assume he is dangerous.
It’s notable how differently such behaviour is read by someone who actually understands meltdowns and what different conclusions that understanding produces.
I’ve noted before that with our younger child we had to fend off an awful GSE case worker who pushed for him to be put on antipsychotics – enough until he wasn’t a problem any more. We were in a position to to resists, not everyone is.
I can’t believe there are so many people in the system who still do not understand autism. It’s chilling.
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... astute collective activism.
What does this look like, Hilary?
(Well done, Kirsty, BTW, again.) -
And what is the solution? Is this a case of a grave injustice (which is the general tenor of the critique), or a difficult clinical/human case that is not straightforward to solve to everybody's satisfaction? Are there other countries/systems that deal with cases of this kind in a better way and, if so, can we hear about them?
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Rosemary McDonald, in reply to
Are there other countries/systems that deal with cases of this kind in a better way and, if so, can we hear about them?
They had been institutionalised their whole life. I read words like ‘challenging behaviour’ and ‘severely autistic’ and ‘violent’ before I even met them (I use they/them to protect their identity).
They were not allowed into the front part of the house where other people lived. They were not allowed to ‘visit’ the community, despite ‘living in the community’. Their room stank of urine.
The walls all had holes in them. On many occasions we physically restrained them, sometimes for well over an hour. They tried to stab me with a spoon and they threw a microwave at my head.
Because it is something I am very ashamed of being a party to, even though I was doing my job and doing what I was told I must do. Because the memory of that person now haunts and drives me to change things.
Because that person is now living in their own house, goes into THEIR community every day and receives 1 on 1 support (not 2 on 1) and is never violent or restrained. How’d that happen? They moved services.
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Hilary Stace, in reply to
There are several other people in New Zealand with a similar 'level' of autism to Ashley. Many of them live in houses in the community. Some live alone with rostered carers and some live with one or two others and some level of care. Some still live with often ageing parents who understand and respond to their needs and are alert to the subtle mood changes. Ashley is a particularly sensitive person who has had a particularly bad deal from the system over many years. My observation that his mental health has deteriorated over that time, as it would for anyone. So his behaviour appears 'bigger' than it is.
As his father says in the Seclusion documentary he could safely and happily live near nature and animals, but it is people who cause his problems. He could even set a little business selling the exquisite fishing flies he makes
What I would like to see is the state apologise to him and his family and also deal with the effects of long term trauma. For example, a specially trained assistance dog would be great for him.
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How many other people are locked up in a similar fashion within mental health?
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Kirsty has been trying to find out about others. It was in her article today. Hard to find http://www.nzherald.co.nz/kirsty-johnston/news/article.cfm?a_id=980&objectid=11652421
Gisborne Herald has a story now
http://gisborneherald.co.nz/localnews/2338840-135/gisborne-couple-fight-for-sonBy the way Ashley is unusual among high needs autistic people in that he is very articulate. Most are non verbal or barely verbal. Which indicates that in different circumstances he could express himself and be listened to.
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Hilary Stace, in reply to
The collective activism started with Kim, as a mother of an autistic child, saying this is not good enough. She reached out to Ashley's parents, found out who else had had some involvement. Called a meeting which were then held regularly, drawing in some people with knowledge and expertise (also parents of autistic kids) of eg legal and policy and practice issues, and then working out how to get the message out with maximum impact. More a spontaneous than formal process. But driven by a desire to fight a significant breach of human rights.
Anyone can do it with the right motivation but it sometimes takes one person with a 'can do' fresh approach to spark things. One reason why I like young people. They haven't got old and cynical like me yet.
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Fast moving story this
Paul Gibson, Disability Rights Commissioner and sometime Access blogger, has called in a UN seclusion expert
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And we thought that mental institutions were abolished years ago. They were basically prisons but for the mentally ill.
I'm luckier than Ashley in that I'm higher-functioning, living independently and in a job. But all the same I've struggled to earn more than the minimum wage, and for much of my working life my wages have been topped up by the taxpayer.
And the Future of Work is extremely relevant for people like me, given that jobs like mine are threatening to become museum pieces, and have little or no recourse to retool. If you've had the "no job without experience, no experience without a job" conundrum, it's just the same for people in dead-end jobs.
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Ashley sounds high functioning with his verbal ability. I worked with severely autistic adults and children for 15 months at Hohepa Hawkes Bay. Most of them were non verbal and sometimes aggressive, though usually to themselves which could be hard to watch. They all managed to live in communal residential houses with their own bedroom but shared bathrooms and living areas.
As a Steiner based organisation they live, work and go to school on a bio dynamic farm. They eat well, get a lot of exercise walking or on bikes (very important and one of the best parts of the job) as well as various physical and emotional therapies in line with anthrosophical philosophy.
No it isn't perfect all the time and staff are paid barely above minimum wage but my sister (severe autism and Down syndrome - perhaps one of the most profoundly disabled in the country) has been a resident there for more than 35 years and it saved her from confinement when she was a child. The IHC could not handle her adequately and 40 years ago their Mangere facility was revolting.
Our family was blessed that someone told my parents about Hohepa and they took her as a child. Nor can we fault government funding. Millions have been spent on her care.
Hohepa is one of the best for mental health care. Occasionally someone is too violent to stay and needs a more secure environment for their own, and the safety of other residents and staff. They are also underfunded in a global sense and cannot pay what the job requires to attract and retain staff. Many are dedicated beyond belief despite the poor pay and there is a strong group of foreign volunteers and paid staff from all over the world, mostly from a Steiner background. Some are there because they cannot get work anywhere else and recruiting people who will do this work for minimum wage is a constant problem.
As a final thought maybe some thought should be given to one agency for the disabled to simplify things for everyone and cut down on admin costs and hassles.
Hopefully somewhere more suitable can be found for Ashley that provides the quality of life and experiences that he deserves and gives his parents peace of mind
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This is an great example of how Parliamentary questions work. Green MP Kevin Hague, who knows his stuff, asks carefully worded questions. The Assoc Minister, who has been delegated to answer the question, falls straight into the trap of assuming a meltdown is dangerous and that that justifies the continued locking up of Ashley. He patronises the subject of the question. He has no idea that seclusion is likely to be poorly recorded, misleads about the family and the DHB working together, and when that is refuted resorts to straight out political attack.
Hopeless Associate Minister, but it is not surprising that the actual Minister of Health is too scared to front on such a serious human rights issue.
http://www.inthehouse.co.nz/video/43773 -
Hilary Stace, in reply to
Thanks for that story. Many of us have asked for a Ministry of Disability over the years. Instead we are stuck with a complex inter-agency structure.
By the way I hear it is very hard to get into Hohepa these days. I know several parents with adult children in that facility. Experiences and opinions vary, but it is good to hear that it works for your sister.
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Sacha, in reply to
I'm luckier than Ashley in that I'm higher-functioning, living independently and in a job.
Fortune is all it is, eh. Should be more, but how do we make it so for us and others?
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Then in 2013 there was a picture of Ashley on the front page of the Dominion Post. Ashley was still locked up in seclusion with only a short daily outing into a fenced area. How come he was still there? I asked around and almost every disability organisation and many agencies knew about his story. Dave and Marlena were tireless advocates for their son.
The most appalling thing about this appalling story is that it's been publicised before, and nothing has changed. I don't understand.
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Joe Wylie, in reply to
And we thought that mental institutions were abolished years ago. They were basically prisons but for the mentally ill.
As it's turned out that "we" were wrong, why would we have allowed ourselves to be misled? Two possible reasons - either we were buying into the notion that "progress" had relegated most uncomfortable issues safely into the past, or that there was no form of disability so severe that it couldn't be addressed by abolishing all forms of clinical incarceration.
Describing the work of Hohepa Hawkes Bay upthread, Stephen Keys says "Occasionally someone is too violent to stay and needs a more secure environment for their own, and the safety of other residents and staff." He doesn't say where such people are sent, but I fear that it's somewhere beyond the reaches of Steiner methods.
Lilith:
The most appalling thing about this appalling story is that it's been publicised before, and nothing has changed. I don't understand.
Amen. While it's beyond my competence to "evaluate" Ashley, he's articulate and presumably able to take care of his own basic needs. I know that far more severely disabled people have existed in the past. There seems no reason to assume that they've vanished. If Ashley can languish in spite of having "tireless" advocates, what about those we've so far heard nothing about?
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For people new to the term I forgot to explain 'wicked' problems. This is a term increasingly used for policy problems like climate change or family violence, that are very complex and resistant to simple solutions. Disability has many aspects of 'wickedness' and Iwrote an earlier post about it.
Joe, there are some of those high needs disabled people around and living in the community. Attitude TV recently screened a documentary about an adult man and his family's fight to find him suitable housing. He now lives in a Spectrum Care (a local provider of housing and services) house in Auckland. One of the problems in Ashley's case is finding and funding an appropriate physical house. That involves Housing New Zealand or a social housing provider, and I'm not sure if they have even been involved so far.
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Rosemary McDonald, in reply to
One of the problems in Ashley’s case is finding and funding an appropriate physical house
I'm somewhat surprised the suggestion has not been made that Ashley's parents move out of their house so Ashley and his support team can move in.
Or maybe that has already been suggested?
If so....the media need to put it out there that this is often the proposed "solution" proffered by 'providers'.
Lillith....no surprises that Ashley's situation has not improved despite earlier media attention.
When the spotlight dims, life, such as it is goes on. We cope, we do the best we can. We hope that one day 'the system' will finally acknowledge the rights....the citizenship of those New Zealanders surviving with various disabilities....but we don't hold our collective breath.
Ashley's Mum and Dad are in the place occupied by thousands before them.
Absolutely shitting themselves with worry at what will become of their beloved child/spouse/other disabled family member in the event of their death.
In the total absence of ANY real, meaningful or effective advocacy.
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Kirsty Johnston eventually got the go ahead from the Herald to work on the story, and she came to Wellington and sorted through the papers and complexity. She met the gentle man who liked the outdoors and horses and made delicate trout fishing flies. But, like his parents, she was not allowed to see the room where he lived.
Is there a clearly stated reason why?
I've only had a chance to see the beginning of the Attitude TV show, where his father was guessing it was something about privacy, but that doesn't seem at all clear. -
The sad fact with shocking cases like Ashley is, that we now have a highly risk averse public, that is the majority of people, who have been outraged by media reports where things went terribly wrong. This is then at the top of the news, and often involves people with a history of mental illness, some with also alcohol and drug abuse, and with at times serious troubles with the law.
Hence the public has in its majority adopted the view, that it is better to keep persons that are considered a risk, whether to themselves or others, or both, put away in some kind of controlled environment or rather confinement.
Add the anti social brainwashing of many years, perhaps decades now, where people are encouraged to look after "number one", are told to compete for everything, to "pull up their sleeves", and to work hard and earn their living, in short neoliberalism and what comes with it, and we have few people prepared to pay any extra taxes for better social and health services, including on disability services.
The government is rather focused on keeping a tight lid on spending, as per capita expenditure in health, education and so has actually remained stagnant or even dropped, and things like offering people tax cuts is more important (to them and most out there), than to actually help in such complex cases.
I have seen enough of various other people struggling to even just get access to needed community mental health services, only ending up with seeing a psychiatrist or fill-in person maybe once a month, to pick up another script for some medication.
The crisis teams focus only on very extreme crisis cases, and are stressed out to the maximum, often also having high staff turnover.
Putting persons like Ashley into appropriate, community based support environments would cost, and the government does simply not seem to be prepared to spend more. Those that are concerned are a minority, and as that means a small number of potential voters, so the persons in charge of the purse strings and running the show are not interested on changing much.
Under this government many "fringe groups" have been further marginalised, and we see it with the homeless situation, particularly here in Auckland. It is the non voters or perhaps opposition voting minorities the government does not bother catering for, and they are the price for the better part of the middle class still doing relatively well, and those struggling with keeping up with rents or house prices, to enjoy the status quo or even new tax cuts in the near future.
I know this is not encouraging, but my observation is, in general society has become more heartless and selfish, weighing up every aspect of their individual's lives, what benefits themselves, before anyone else.
At the same time they let the population grow to "boost" the economy, which means we will have even greater needs by more people, including many new migrants, for the future. The price that will come with all this will be huge, but so far, Key and his government do not give a damn, he will retire after this or a fourth term, and leave it for someone else to tidy up. We are heading into becoming another more anti social society, like they exist elsewhere in the world, a dog eat dog society.
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Russell Brown, in reply to
This is an great example of how Parliamentary questions work. Green MP Kevin Hague, who knows his stuff
Kevin Hague would know his stuff anyway, it's the kind of politician he is, but I'm sure the fact that he has an adult Asperger son himself makes the issue more acute for him.
But, oh my, what a woeful performance by Sam Lotu-Iiga.
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Rosemary McDonald, in reply to
I know this is not encouraging, but my observation is, in general society has become more heartless and selfish, weighing up every aspect of their individual’s lives, what benefits themselves, before anyone else.
Marc, it may well be that I tend to speak more with others on the margins...other Bus dwellers who are refugees making the most of bad situations beyond their control, travelling in the 'regions' where impacts of health and disability require a greater degree of resilience to cope...
But I have noticed that more and more people do get it. They are personally affected, or know someone who is personally affected.
The huge increase in the numbers of people trying to access mental health services, the significant increase in the numbers of children with a diagnosis of autism....
Disability, including mental health issues is becoming almost 'normal', or even 'usual'...give it time (she types with uncharacteristic optimism) and maybe these conversations will have more impact on policy.
Or not.
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Rosemary McDonald, in reply to
But, oh my, what a woeful performance by Sam Lotu-Iiga.
Not the first time poor old Sam has found himself on a hot griddle.
Sometimes methinks he's used as a kind of sacrificial lamb.
(you'll remember he was in charge of Corrections?)
It was painful to watch....I actually felt sorry for him...
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Joe Wylie, in reply to
Attitude TV recently screened a documentary about an adult man and his family's fight to find him suitable housing. He now lives in a Spectrum Care (a local provider of housing and services) house in Auckland.
Many thanks for that Hilary. Some remarkably positive moments there, though Steven's parents expressing that we as a country have "gone backwards" on these issues is sobering.
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Hilary Stace, in reply to
Re not being able to see the room - this is Capital Coast DHB property and everything is securely locked up. So it is like not letting family into the prison cell where their son is held. They are only allowed into approved public spaces. The official reason is probably something about 'privacy' or 'safety'.
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