Posts by Angela Hart
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"I don’t want to criticise other parents as every autistic child and every family experience of autism is different. But such stories can be harmful. They reinforce the view of autism as something abnormal and undesirable, and legitimise treatments that may or may not have any scientific validity."
Substitute disabled or another particular diagnostic label for autistic and you can see this applies across the board. If we can help people who experience very negative effects that's great, but we should still accept people as they are. Thankfully we are not all made the same, life would be much less interesting if we were.
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Access: Cause, care, cure and celebration, in reply to BDB Inc,
I'm heading in the same direction as you with regard to the health system being broken, but I need to retain some hope because we will need it again.
There are good people within it but you spin the wheel and take yer chances....
I do wonder if everyone gets the same little chat as we do about whether resuscitation is wanted- or if it's down to an erroneous quality of life judgement being applied. -
Hard News: Autism and celebrity, in reply to Sue,
It's a big call to declare ABA should go to the front of the queue when there are so many other unmet needs.
yes, that's important. Too often it's the fashionable or high profile that is implemented or funded, without evidence to back it up, when the same money more sensibly spent could have had much better results.
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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. -
Access: Cause, care, cure and celebration, in reply to debunk,
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.
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Access: Cause, care, cure and celebration, in reply to Hilary Stace,
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.
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Access: Disability Stakeholders, in reply to Martin Sullivan,
I've always conceived of the 'disability sector' as that great big industrial/service complex which exists on a continuum from those wanting to make money out of disability and disabled people to those altruistic services & people who are there to support us in the decisions we make about how we want to live our lives. In short, the disability sector is a bit like the curates egg insofar as it both exploits disability and supports disabled people.
I've been told the correct current term for the above is PLOD- people living off disability
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Access: Walking Is Overrated, in reply to Hilary Stace,
Thanks for the link, Martin and Hilary, the piece is well worth reading and it's entertaining too.
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Well said BDB Inc.
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Access: Disability Stakeholders, in reply to Sacha,
Yet when agencies claim to have "consulted the sector" guess who they have spoken with?
yes, it rankles that groups representing paid support services purport to represent disabled people.