Posts by Angela Hart
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Access: Power to (all) the people!, in reply to Rosemary McDonald,
Democracy is all very well...but it MUST be in good faith....must be completely transparent.
Democracy?
Forced local body amalgamations, as with Auckland
http://www.nzherald.co.nz/hawkes-bay-today/news/article.cfm?c_id=1503462&objectid=11299064Disenfranchisement and voting difficulty
http://nzhumanrightsblog.com/newzealand/denying-voting-rights-to-prisoners-in-new-zealand-what-was-parliament-thinking/
and
http://publicaddress.net/access/power-to-all-the-people/Removal of rights
http://www.legislation.govt.nz/act/public/2013/0022/latest/whole.htmlto name a few of the attacks on democracy in this country by the current government.
As for transparency I'm sorry to say that is a joke, it must be when the Ministry of Health claims that the agencies it contracts are not covered under the OIA (personal communication). If that is allowed to stand then any agency contracted by any ministry is exempt from the OIA, and we have opaque, not transparent government.
We also have opaque policy and evaluation at the MSD
http://publicaddress.net/speaker/how-is-government-evaluating-its-welfare/
and there are moves in Education that are not/have not been transparent either (charter schools, Christchurch school changes).The Keydom of New Zealand, methinks.
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http://www.stuff.co.nz/nelson-mail/news/10304939/Father-jailed-for-raping-daughter
"Defence lawyer Steven Zindel argued there was little or no impact on the 4 year old victim and there was no coercion.
"There's not the coercion, I know that is because she is young. There is also no immediate effect on her."
WTF! I thought Rosemary was a little hard on the legal profession, but no, she's right.
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Access: Power to (all) the people!, in reply to Hilary Stace,
and yet the Government continued the case through the courts during Ruth Dyson's era, or am I wrong?
If time and consideration has brought wider recognition of the enormous unfairness inherent in this Act, an echo of similar unfairness demonstrably visible in the disabled community in New Zealand, that's a good thing. But time is one thing many of us don't have a lot of. -
Here's a piece from a study done by Newcastle University in the U.K. Newcastle is a centre of excellence for research into muscular dystrophy, the study is talking about Duchenne muscular dystrophy, a progressive disorder which gradually makes boys fully dependent on others.
"Rare diseases are massively underfunded generally and the cost to society is often hidden as so many costs are borne by the family themselves. Our figures show that DMD imposes a severe economic burden on the family and friends of affected people, as well as society as whole. It is essential that more money is spent trying to find ways of easing this burden on patients and families.”
http://www.healthcanal.com/public-health-safety/52775-rare-disease-needs-more-resource.html
When families and their disabled members want to care for each other, why on earth should there be additional financial penalties for that choice?
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Access: Paying Family Carers - What was…, in reply to Christine Peet,
Hi Christine, if you ask for your support hours funding to be provided under the Individualised Funding scheme, you can then advertise for, interview, employ and train your own staff. It does mean more work and effort but it also means you have control over who your support workers are and how they are trained as well as when they come to you. We gave up on agency staff years ago because of the calibre of person, lack of reliability and lack of training. More recently we have some IF hours and there is definitely a better chance of getting the kind of support you need under this scheme. It also makes you the employer so you have fire power! (but you have to comply with all the employment rules of course).
People who are non-verbal are incredibly vulnerable, especially in the agency care situation. This needs to change, but we don't have the systems in place. Much more effort needs to be made to ensure that people are getting the support they need, that it's reliable, that they are comfortable with it and not feeling threatened. The NASCs have this responsibility but don't want to make work for themselves by finding out about problems that they will then have to make an effort to fix. This auditing role is probably not a big part of their key performance indicators, except for Funded Family Care, where the MOH is clearly scared stiff that family members are going to turn abusive because money is involved. There is a strict auditing process for the first 6 months of FFC.
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Speaker: How is Government evaluating…, in reply to Kumara Republic,
Leaks are probably the biggest hope we have against what appears to be regulatory capture.
We can hope, but there is an obvious climate of fear and with good reason.
I'm sorry to hear about the issue with your teeth. There seem to be all sorts of cost cutting measures in the health system right now. We were told we would have to buy our own masks for use with non-invasive ventilation (breathing support from a machine) and required to sign a form to that effect. As it happens we've so far managed to avoid buying this essential medical equipment on principle. If the health system doesn't cover essential medical supplies the country has real problems.
I may be looking at a similar situation to yours with my own teeth, but I'm putting it off as long as I can. I'm getting on, I may be able to get away with toothlessness :-) -
Speaker: How is Government evaluating…, in reply to Marc C,
I fear things have now got out of control and much more serious damage may need to happen, before any of the mentioned parties and stakeholders may review what they are doing.
I agree with you. If there isn't an honest, open and voluntary change of direction from those in power, NZ will see social upheaval forced by the many with nothing much left to lose. It's the direction the juggernaut is headed in. Will the warnings be heeded? There's no sign of them being heard by those who need to listen and respond. Unfortunately it often seems to take extensive civil unrest to remove so called citizens' representatives who have chosen to ignore the function they were elected to perform.
What we currently have is a government undertaking rapid reforms in health, education and social welfare without full communication of these changes to the public, without effective evaluation of the changes or the capacity to reassess and correct quickly when the policy clearly doesn't work. It is not a responsible way to govern a country. No doubt when Mr Key and his colleagues retire from "public service" there will be Knighthoods as usual, just as for Robert (no I won't open the books) Muldoon. How crazy is that?
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Thanks Hilary, I went looking to see how well the media covered this occupation and found this piece. It provides an understanding of what a well supported high needs life can look like, and the education and social life it enables for this young woman, who can realise her potential and be gainfully employed and live a good life- if the funding is not pulled.
http://www.bbc.com/news/blogs-ouch-28091127 -
Speaker: How is Government evaluating…, in reply to Marc C,
By the way, there is NO way to proceed with a challenge of a MAB decision and take it further to a court!
Perhaps the route taken by Acclaim? A shadow report to the UN highlighting the lack of access to justice of ACC claimants.
http://www.acclaimotago.org/page2.htmlIt would require a group of (dis)affected individuals to organise, in spite of their financial and health difficulties and is not simple, but as Acclaim has shown, it can be done. It remains to be seen whether the embarrassment of being shown up in the international community is sufficient for the Government to fairly address the problem in a timely manner.
"So we have a Chief Science Advisor who does not dare to speak up and hold his government to account."
We have a great many individuals and organisations who consider that they have too much to lose by challenging policy. The Problem Gambling foundation serves as an example. Most of the DPOs (Disabled People's Organisations) rely on Government funding and are no longer effective advocates.
http://www.victoria.ac.nz/sacs/pdf-files/Fears-constraints-and-contracts-Grey-and-Sedgwick-2014.pdf
The media are also quite careful what they report and how they report it, probably for sound financial reasons.
Dr Gluckman, is smart enough to know when he is being used.Thanks for the Nature link, I've skimmed it but there's a lot more to explore there.
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From Innes' speech:
If you don't have numbers and work towards those numbers, it’s just not going to happen.”
and that's part of the trouble here, no specific measurable targets, no statement of what will show success or failure. This affects the Disability Action Plan http://www.odi.govt.nz/documents/what-we-do/ministerial-committee-on-disability-issues/disability-action-plan-2014-2018-a3-image.pdf
and the Carers Strategy Action Plan http://www.msd.govt.nz/about-msd-and-our-work/work-programmes/policy-development/carers-strategy/index.html#TheCarersrsquoStrategyActionPlanfor2014to20187Lots of nice words, sounds of good intention, but actual positive ACTION, no specific targets or dates for them. Placatory words we'd all like to believe but
show us the evidence! We've been placated and let down for far too long already.In another area which powerfully affects many disabled people and their families, the social safety net run by MSD, ACTION occurs rapidly and forcefully. It is also without any public evaluation (other than financial see Michael Fletcher on Speaker http://publicaddress.net/speaker/how-is-government-evaluating-its-welfare/) but the impacts are likely to be very negative for us. Change can be pushed through rapidly when it suits power, but in the disability field positive change is slow. It's a question of priorities.
We should be worried because, in spite of the spin, the MSD is implementing reforms suspiciously similar to those in Britain where disabled people have starved to death or taken their own lives after their benefits were slashed. We have a history of emulating the mistakes made by the U.K. The fact that our Australian neighbours are moving in the same direction may not save us.