Where do I fit?
I take the view for most aspects of life that extremes are bad and balance is needed.
For instance, while I can see a great deal to celebrate in some aspects of autism and some of the people in certain parts of the spectrum, I don't see a lot to celebrate at the extreme end of this spectrum. Life seems so difficult for all concerned for those in this situation. And even those with a lot to celebrate nevertheless miss out on much in the area of relationships that most of us cherish.
Similarly there is a strong deaf culture which values and supports its own, but nevertheless, those with full hearing loss are unable to sense a world which is open to the rest of us, and which has its own beauty. They are accenting the positives and making the best of life and that's a good thing, but they are still missing out on aspects of life the rest of us enjoy. However, we all miss out on some things don't we? We don't all manage to see other parts of the world or wear designer clothes, and these things don't necessarily matter.
Meanwhile disabled adults and their family carers had to fight in the courts for a decade for the family carers to be paid on the same basis as strangers coming into the home.
But although they won all the court cases, they haven't actually won, have they?
Funded Family Care does not pay family carers on the same basis as strangers coming into the home.
As the Minister of Health said last year when announcing the minimum wage for a maximum of 40 hours a week for only some parents (not parents of children, nor spouses) and denying any further access to legal challenges, ‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).
Yes. The Act intentionally discriminates against partners, spouses and parents of children under 18. It does so with malice aforethought, as can be seen in the cabinet papers relating to this on the MOH website http://www.health.govt.nz/our-work/disability-services/disability-projects-and-programmes/funded-family-care-notice-and-operational-policy/funded-family-carers-background-documents
‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).
and also with a subtext that it doesn't matter how poor or disadvantaged this makes these families, these people don't matter.
Well we do matter. We are a significant portion of the population and we have votes. We need to organise in ways that cannot be subverted by government funding and we need to make our voices heard.
Sorry, the link above is not quite right. The easiest one to check is this one http://www.health.govt.nz/system/files/documents/pages/cabinet_paper_-_proposed_response_11_december_2012.pdf
your post is about a lot more than Funded Family Care, I shouldn't get hung up on it, but the Public Health and Disability Amendment Bill passed in May 2013, was pushed through under urgency, the information provided to MPs was heavily redacted and as far as I can see if we had a democracy then, it died that day.
Cause and cure both take away from what is to some degree. While we should want to make life better for everyone, we should also accept people as they are. Here's a contentious statement for you.
Most of the people I know who have a disability or a close connection with someone impaired are better people than most of the people I know who have not experienced a close relationship with someone disabled and are not disabled themselves.
By better people I probably mean their values better align with mine.
Cause and Cure and Care...
If finding a cause leads to a cure requiring ongoing treatment through therapy or medication then yes...$$$ will be directed towards research.
But, if finding a cause leads to prevention....thereby eliminating the need for long term medication....might not be so attractive for funders....who are often in the pharmaceutical industry.
This is obvious in the cancer/leukaemia field. Find a cure campaigns for Africa...yet contact the organisation to see what they are doing about identifying causes of these diseases. and its smoking....then that's it. The fact that there is sound research showing causal links between these diseases and environmental toxins is ignored....why is that I wonder? Google Yannick..the French vineyard worker.
It is ALL about the almighty dollar.
And, fighting to keep your snout in the funding trough.
I am considering putting together a series of articles headed up...
Disability; Dollars, Deceit and Disacrimination.
Largely focussed on the Family Carers Case, the PHDAct(2) and the Funded Family Care Policy.
Thank you for these responses. This Access blog (all the posts and ongoing) is providing a forum for disability-related discussion and information that is often under the radar.
I do not understand the question "where do I fit" .
I have once been tested to exhibit "aspie -ness" (and much more neurodiversities)
Where do I fit? I don't.
I am here and now .Any placement by diagnosis(opinions) into "this" or "that" would reduce who I am (my being) into someone else's opinion/non acceptance of neurodiversity.
Well said, BDB. That's a nutshell description of the problems with labelling.
I meant - does your own thinking align with any of these approaches? I apologise for using the word 'fit' which has bad connotations in the disability world. I trialled these ideas in a presentation to people who did not come from the disability sector so was encouraging a different way of thinking for those outside looking in.
Don't apologise for the word 'fit'. The word usage is appropriate.
My thinking was expressed in my first response .
Haven't those "outside" been the ones deciding how we are to understand and treat autism? When they do not fully understand it and to me growing number of neurological developmental changes seems like a metaphysical reflection of who we are now. In this world how is the state of our Communication. Social. Behaviour ?
You want to know which autism philosophy we think is best or where the funding should go?
The cause is still unknown.
There is no cure(there are drugs that sedate, CBT, things, most parents find their own peace, acceptance & love works the best)
Care & acceptance is always a winner , we don't have to isolate neuro diversities and 'celebrate' any behaviour, social & language 'difficulties' but to accept them in the moment so you can feel peace is all that is needed. All underlying negative thoughts and feeling of non acceptance will be non verbally transmitted to the person.
Care and acceptance.
to accept them in the moment so you can feel peace is all that is needed. All underlying negative thoughts and feeling of non acceptance will be non verbally transmitted to the person.
That really resonates for me. Well put!
The big thing is that disabilities are a spectrum, and the question is how far along a given spectrum can people be before they're acknowledged as disabled. That works two ways - people struggle to have genuine problems accepted or help funded, but others struggle to be accepted as functioning people in their own right (rather than being labelled and told they need to be cured).
I'm extremely skeptical of people who want to "fix" me because I've had so few positive experiences with them. Invariably their version of "fixed" is either that I'm completely subservient to their wishes or I'm hiding how I am in order to appear "normal" regardless of whether that makes me happier. Should I have to be cured so that I don't make you uncomfortable? Isn't that your problem?
Preventing the most serious cases of autism, depression, whatever disorder you want sounds like a reasonable idea to me. Things that make people deeply unhappy or dysfunctional in their own lives seem to be good targets. But if we also take away people who can focus single-mindedly on things that fascinate them, people who get wildly exuberant (without drugs) and make mad, passionate art about how they feel,people who stare into the abyss and come back newly enthusiastic about what they want to do, what are we losing as a species or society?
And by doing that we open people who can't, or choose not to, use the cures to a whole raft of negative effects. There will always be people at the margin who don't get the cure or can't prevent the problem, and how we deal with them is a real test. Should we shun children born to parents who reject the offer of a cure? Or even just punish the parents? How do we do that without affecting the child? Ethics can be fun :)
Should I have to be cured so that I don't make you uncomfortable? Isn't that your problem?
I am glad you can pointed out the medical model "fix" you idea, they want to have total control ( leads to your disempowerment) that is what happens when modern medicine meets neuro diversity.
You get reduced to a label(s) of someone else's opinion which effects (in children it forms) your self identity. I am all for loosing all these labels we attach to people.
Yeah there is no 'cure' & they do not know the cause.
Drug treatment sedates to make differences less marked so other people can feel better .Depression(suffering ) is treated with drugs -same thing.
They think they must find cause without looking at humanity- must cure without understanding.
But if we also take away people who can focus single-mindedly on things that fascinate them, people who get wildly exuberant (without drugs) and make mad, passionate art about how they feel,people who stare into the abyss and come back newly enthusiastic about what they want to do, what are we losing as a species or society?
Ethics can be fun :)
Glad to hear it. Because it is really important that we talk about ethics, including bioethics, and try and think and behave ethically in anything to do with disability.
Can't help thinking that ethics ought to dictate a person-centred approach. Doesn't say much for the current situation in New Zealand as far as I can see.
There was in 2008 at least a government that signed the convention by the UN, that was supposed to deliver on the rights of disabled persons here. Sadly, as the government changed later that year, it seems to have become a bit of a neglected matter. I am rather furious about what goes on, and the mainstream media has also failed to put focus on what matters.
We have quietly had an introduction of welfare reforms that treat sick, injured and disabled with little respect now, although officially MSD and WINZ claim the opposit. It is not about "support", "help" and "empowering", when you swing the cleaver about to chop your entitlements off. That is though what is happening in a cunning way, similar to what the governments have done in the UK.
I must appeal to the public, to take note and to inform themselves, and certainly also the MEDIA must feel compelled to do the same, and study stuff like this:
WORK ABILITY ASSESSMENTS DONE FOR WORK AND INCOME – PARTLY FOLLOWING ACC’s APPROACH: A REVEALING FACT STUDY
Treating those on benefits, who are sick, injured and disabled, as if they are perhaps malingerers, like one Professor Aylward from the UK suggests, that is at least close to breaching human and disability rights. I wonder whether anyone out there cares to take note of this, and take a bloody stand, thanks.
Can't resist noting somewhere that "autism" came into the DSM in 1980 as "infantile autism" and 1987 as "autistic disorder" ..during seven years studying psychology in the 1960s and early 70s we did use terms like "withdrawn" presumably for behaviour associated now with the DSMV "ASD"... and this period included experience as an OT assistant in a mixed age psychiatric ward. Times change. I myself share the view that medicalising and labelling behaviours is very restrictive and it has been suggested that the pharmaceutical industry encourages it to sell their product eg Ritalin for ADHD ..and never heard of that syndrome either in that era.
Further to previous opinion, I thought the recent Listener article on "Dementia" - a multivariate syndrome with many documented physiological (eg stroke) and environmental (eg loneliness) causes - was sensible.
Great point not discussed as the medico industrial label industry does not want to stop labeling individuals .
Some specialists in 2006 said I would die, when I did not (even with the three months of needed ICU care removed) they decided ( even with an in house ethical specialist) to try to end my life with forced active rehab while I was in critical condition .
My impairment/disability include "symptoms" of ASD (and much more), parietal lobe epilepsy, mirror-touch synesthesia , purple cars taste like grape, misophonia, ( also some sexy & rare neurological "problems"), a SCI,severe pain , "reginal pain disorder, motion blindness & left side blindness , headaches, migranes, numbness, nerve damage, "problems" with Cognitive Function (e.g., attention and anterograde & retrograde memory)Motor function (e.g., extremity weakness, impaired coordination and balance)Sensation (e.g., hearing, vision, impaired perception and touch) &Emotion, lost my second language (sometimes it sounds like someone is speaking in a different one) my condition is not stable the conditions are just as unstable. One day I cannot get up with pelvic and spinal pain, then three days the whole world is tossing like a boat that wants to throw me into the sea.
Anyhow I agree these acts of attaching medical labeling to babies, toddlers and people then funding heaps say you are trying to stop the stigma these labels create is such a stupid act .
The AMA sit around and make up disorders like C.U.D. if your coffee intake effects your behaviour. If it wasn't so harmful I would laugh .If your toddler tantrums and you say its a problem they are labeled , if you show signs of opposing the govt (or are a non CIA funded activist) you probably have O.D.D.
As the NZRA spokesperson said its a rotten egg( paraphrasing) we have a case of the industrial medical complex in the society of the investment banker.
Society has funding model syndrome .
Perhaps NZ medical casual behaviours re diagnoses and treatments relate to ACC and no liability for mistakes?
Maybe. Certainly its very difficult in NZ to hold medical people to account for their actions or lack of them. While we don't want the US situation where they perform every medical test under the sun for the slightest provocation in order to protect themselves from lawsuits, neither do we want a careless response to health need. I've seen so many mistakes and malpractice in a nursing setting, and so many Docs who can't bring themselves to consult with others on a complex case. Hospitals are extremely dangerous places. Best avoided if at all possible.
In theory NZ use to have the better ideas for a health system than the USA, a once open system when mistakes are made they are acknowledged (without liability) and remedied .
Now mistakes are not acknowledged and there are no watchdogs.
Still have no liability but roles of the drs have changed and they are now "keepers of the funders money" .
The irony is NZ medical system still gives monies to whoever and whatever companies they want want to profit but get the providers to keep the patient healthcare & treatment costs down by denying them by way deliberate misdiagnosis. The old HDC commissioner said 200 should be struck off -but didn't do it.
I really don't understand why doctors accepted the role change from one of the most honourable professions to a bureaucrat in a corrupt bureaucracy.
Ouch! I wouldn't have gone that far from my own experience, although there's no question that financially driven triage is a possibility. What we've experienced could be ascribed to bad attitudes, lack of understanding, incompetence and failure to inform/consult on a professional level. Most life threatening were one incident with a doctor in training who failed to present to remove fluid for about 8 hours by which time it was affecting the body badly enough to involve ICU/HDU- incident wasn't even recorded in the notes. Nursing staff could not get him to come. Would not phone consultant. Then they tried to get me out of the room. I doubt my daughter would be alive if they had succeeded. In hindsight, the young Doctor had probably been given this procedure to do as training and didn't feel up to it. In the end I pressured him and he was successful.
Other life threatening situations all nurses.
I hope that your assessment of Doctors applies to a very few BDB Inc.
The DHBs try very hard to apply no fault incident reporting, but I don't have recent experience to tell whether it is working or not. I do know that the incidents which happened to us were not reported by the staff, in fact they were concealed. I should clarify this royal plural :-) When my daughter has to go into hospital I go with her. Nursing staff do not understand her requirements and would not be able to manage them if they did. So we have the advantage of being two, not that it has helped noticeably in terms of care. But it has meant that I picked up some errors (medication for instance) before they became fatal.
If the HDC said in his book 200 med providers should be struck off that is from his findings so his are not mine.
Post 4/4/6 no dr's treated my acute and serious life threatening neurological, internal or orthopedic injuries , they used all their combined medical knowledge to not treat or care for me but to assist 'funders'.
I'm sure its possible these same drs treat other people as I noted a newspaper story a man got some acute treatment and injury care that i needed .
Sorry I am a total skeptic about the NZ 'healthcare' system- I believe its broken.
I do not believe the role of "keepers of the crowns money" should be taken on by drs as it causes cognitive errors .I am very happy to hear you have access to a good dr, for I am sure there are some that remember the real role of a dr .
LIke with the case of the DPO"s trust comes when we are able to predict what other people will do, and we achieve that by repeated cooperative actions.