Posts by Hilary Stace
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My daughter and a friend's son were diagnosed with leukaemia about the same age although we were in Wellington and he was in the US. His treatment seemed to be much more intense and longer with long stays in hospital and chemo via lumbar punctures. My daughter's was administered via a butterfly in her hand. (This was a few years ago and standard treatment is much gentler now). We were home most of the time, hospital stays were rare, and she went to school as much as she felt up to it. It seemed like they had more or less the same type of illness but the US treatment seemed much more all encompassing and risk averse while ours seemed was much more relaxed and child centred. Ours was all free as well as access to free counselling, household help, childcare etc. Theirs was very expensive. I am probably totally wrong about all this but just my impression at the time.
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Interesting sector briefing (policy paper) from the providers' body the NZDSN
http://www.nzdsn.org.nz/Blogs/477/60/important-nzdsn-sector-briefing-now-available/
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Up Front: Well, Read Women, in reply to Carol Stewart,
Yes, and I have a copy somewhere. There was also a documentary about her a few years ago. I have a friend who collects Moomin things (mainly from Japan) and gives them for presents so I have a lovely Moomin calendar in the kitchen.
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Access: Disability as a wicked policy problem, in reply to Rosemary McDonald,
Thank you Rosemary and Peter for re-reading this whole thread (which I must do too). I'm going to a seminar today about an inclusive New Zealand so I wonder if I will hear any new answers. I also heard someone high up but reflective say that disability support is actually mainly about income maintenance. So that UBI thing again.
And that awful assumption that people will rip the system off given half a chance is so untrue and disrespectful of disabled people and beneficiaries generally. They are just trying to survive on minimal money. We know which category of people is most likely to rip us all off and they rarely get any sanctions.
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What annoys me is that if resources are so tight, as they all claim, that it is wasted on this petty bureaucratic audit stuff. It takes up so much time and energy from people who don't have much of either.
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Tove Jannson and Astrid Lindgren were two reasons why Scandinavia was at the top of my OE destination list.
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Thank you all for this excellent discussion.
I have been away all day - hearing about some really tough stuff at the cutting edge of disability support. Just one example: a new barrier to deal with - a cut in the disability allowance because an autistic person is shock, horror, still using the medication that was approved last year. Now needs a new authorisation by another part of the bureaucracy requiring detailed itemisation and written reasoning by the pharmacist and doctor. No, they haven't yet recovered from autism. The allowance won't be reinstated until someone high up has decided the person with autism still requires this medication, and which could take several weeks.
There are some really strong people out there coping every day - disabled people and their families and supporters. Nothing is easy.
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Access: Disability as a wicked policy problem, in reply to Rosemary McDonald,
Rosemary: Serious question and trying to be positive re the MoH job. What do you think this person could actually do to improve things, considering the monolithic structures of the Ministry and other government agencies, and the risk averse, financially tight government? What would you do?
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Access: Disability as a wicked policy problem, in reply to Tom Adson,
Thanks Tom. I have largely been out of the social media loop for the last few days at the Altogether Autism conference in Auckland. There were some good presentations by those with lived experience and some by people trying to do their best in challenging circumstances. Also some slightly defensive ones by overworked and under-resourced public servants. Obviously too hard to work across silos. Next conference I would like to see public servants from a variety of agencies on a panel together answering the challenge - how can we work together better to make a difference for the disability community?
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Might not be ready to screen yet. Just heard they were working on it.