Access: Some aspects of New Zealand’s disability history – part one
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Hilary Stace, in reply to
At the moment some disabled people who have a caregiver cannot use that caregiver's paid services while in hospital. That means there is often no one in the hospital setting who knows the person's needs. Some deaths have occured in recent years through such things as feeding issues. In busy hospital wards there is not usually the staff time to provde the extra attention. Some DHBs still have disability committees and some have a bit of staff specialism but that does not mean crucial support in the ward situation.
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Here's another piece from the news that got me thinking about our disability services. It talks about slavery and exploitation, without clearly defining them, but we have government sanctioned exploitation of family caregivers providing many hours of care to our most disabled people and living on one of the lowest benefits available, the married couple supported living payment.
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Angela Hart, in reply to
Agreed, I have found that I need to move in to the hospital when my daughter is unwell. MOH funding does not cover carer support when a person is in hospital, they call it double dipping as they seem to think that the hospital staff can always provide adequate support. That's a crazy stance to take as staffing ratios are always based on caring for particular classes of health issue and NEVER take account of additional support needed for disability (in my experience :-).
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Sorry, I forgot to put the slavery link in -oops
http://www.radionz.co.nz/news/national/259584/hundreds-'live-as-slaves'-in-nz -
Sacha, in reply to
Double-dipping? Grrrr. Health agencies still have a way to go to understand health and disability are not the same thing. That reflects a disgusting lack of investment in leading better understanding.
One man pointed out that the DHB could have trouble getting up-to-date statistics on deaf people, since that question was left out of the last census.
Advocates do not do ourselves any favours by saying blatantly untrue stuff like that. Of course it was included. Refusal by StatsNZ to release numbers at local level is bad but nothing new. Again, crap leadership all round.
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Sacha, in reply to
Some DHBs still have disability committees and some have a bit of staff specialism but that does not mean crucial support in the ward situation.
The ineffectiveness of those advisory committess is revealed whenever action requires budget rather than gum-flapping.
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Hilary Stace, in reply to
I think there is some variety around the country. For example, Capital Coast, Hutt and Wairarapa now share one committee. I would be interested to hear whether any of the DSACs around the country have any influence on practice.
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Rosemary McDonald, in reply to
That means there is often no one in the hospital setting who knows the person’s needs. Some deaths have occured in recent years through such things as feeding issues. In busy hospital wards there is not usually the staff time to provde the extra attention.
Hah!!!
When HWMBO was in hospital having chemo....we were told in no uncertain terms that hospital staff would NOT do any of the usual (invasive, but routine (for us) cares), they would NOT do or assist with ANY transfers and they insisted on having someone familiar with his care needs available at all times.
Regardless of the fact that, in the light of previous nightmare experiences, there was no way Peter would be abandoned into their exclusive care...especially if he was too ill to speak for himself....it is quite appalling that such conditions were set.
There were some nurses who did make a real effort to get their heads around the more tricky aspects of a high spinal cord injured person's needs and were willing to help with repositioning and transfers as HWMBO became very ill. These were the nurses who took the time to read the information we had printed out for them about some of the medical issues that tetraplegics and and their carers have to be au fait with.
But they were pretty thin on the ground.
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Rosemary McDonald, in reply to
the HIGHEST care needs
As I’ve said before, I’d caution against that assumption. It certainly doesn’t help collective action.
At some point Sacha...would it be possible to discuss this?
I am not sure what the issue is with me using this term.
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Now that Andrew Little is Labour Party leader I would like to see him progress something he flagged a couple of years ago when he was ACC Spokesperson. He noted the inequitable disability funding between ACC and MoH and asked why and what could be done about that? But he then changed portfolio areas.
There is an opportunity with the lowering of the ACC levies to keep those levies and properly resource full disability support for all those who need it. This won’t happen of course but we need those discussions about equity to start again.
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Rosemary McDonald, in reply to
Again, Hilary you hit the nail squarely on its head.
Unfortunately, this is unlikely to happen unless the organisations representing the interests of disabled (and famiy carers) speak out loudly and clearly against government policies that perpetuate this gross disparity.
This will not happen unless this.... http://podcast.radionz.co.nz/mnr/mnr-20141120-0735-community_groups_silenced_by_fear_of_funding_cuts-048.mp3
issue is addressed.
P.S. Luckily for us we delayed our usual shutting down of Natrad the other day when the usually bland afternoon programme came on....we could have missed this...http://www.radionz.co.nz/audio/player/20157548
Thank you, Hilary.
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Sacha, in reply to
Other groups of disabled people such as those with impaired thinking also may have a high ongoing need for care services. You appear to be assuming that high need means only physical impairment, that's all.
One of the things preventing significant progress in disability politics is our fragmentation, mainly caused by the siloed medicalisation of services and support organisations. As a community we need to think broader and build alliances to get the changes we so desperately want.
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Hilary Stace, in reply to
Thank you Rosemary. I was thrown by the Dr bit (which I only use on funding applications) and that he wanted to talk about autism. But hopefully got a little bit of disability stuff in. Have great admiration for people who talk easily on the radio.
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Rosemary McDonald, in reply to
You appear to be assuming that high need means only physical impairment, that’s all.
No, no, no, no, no!!!!
I could not have made my message anymore confusing if I'd tried.
If I have an area of particular interest it is what has become known as the Family Carers Case...more accurately "Atkinson and Others versus the Miserly of Health"
Only three of the parents were caring for their adult physically disabled children.
The rest were caring for children who had varying diagnoses that could come under the banner of " impaired thinking".
These are the individuals who would most definately be incarcerated in the institutions Hilary writes about if it were not for the committment of their family to facilitate them living something akin to a 'normal' life in the community
These are also exactly the kind of individuals who are at considerable risk in the care of contracted providers.
You will have read for yourself Sacha the multitude of reports of abuse, assaults and neglect to the point of death that these people have been subject to.
To continue the ACC/MOH disparity issue....ACC has an excellent and thorough assessment 'tool' for those with neurological/brain injuries that could easily be used to assess those under MOH care who display similar, if not identical behaviours.
ACC is legally obliged to take into consideration the risk to the health and welfare of the client if supports are not put in place to keep them safe, AND to support a certain quality of life.
Ditto for those with Spinal Cord Impairment.
A number of fine NZ based studies have been published on these disparities which examine the health, social and financial outcomes of the two groups.
I did comment somewhere, sometime ago, when those diagnosed with Autism were welcomed into the MOH:DSS family without having to have a dual diagnosis.
All was going to now be well within the ASD community since Needs Assessments would be done and Supports put in place.
Being a Cassandra, I advised a little caution.....
The NASCs have struggled for years to do proper assessments for those with care needs which are comparitively easy to ascertain....like those with spinal cord impairments who could be compared with their ACC peers.
How the hell was such a dysfunctional system as the NASC going to cope with those who's 'needs' were far less clearly defined?
"One of the things preventing significant progress in disability politics is our fragmentation, mainly caused by the siloed medicalisation of services and support organisations."
Agreed....but those with physical disabilities often have primary and/or secondary medical ssues...which if not properly addressed can significantly reduce their quality of life...if not cause their death.
The very fact that they have an obvious disability can often impede the responsivenes of medical professionals, who frequently make 'quality of life' assumptions before even examining or talking to the person.
If one's disability is not immediately visually obvious....
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Rosemary McDonald, in reply to
Hilary, Doc, you did just fine.
Like a pro....
and hot on the heels of the Robert Martin interview!
Was that serendipitous?
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Hilary Stace, in reply to
Luck. I just wanted people to hear a good feminist anthem and go and see that great movie Pride.
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Oh dear, oh dear, oh deary me......
Local hospital today, we were heading for the exit as a young man with Downs and his mum were on their way in.
Mum stood well back as the young man approached the volunteer 'help desk' to ask about blood tests.
I heard him, clear as a bell.
Help desk lady obviously did not.
She called out to mum....: "What is it he wants?!"
Should I have followed my instincts and gone back for a quiet word?
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YES!!!!
http://www.stuff.co.nz/national/crime/63482391/IHC-arm-admits-part-in-bath-drowning
Nathan Booker's death at the hands of Idea Services.
Charged and convicted....and in the "crimes" section where it belongs.
A tiny, little win.
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