Posts by Rosemary McDonald
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Mea culpa....
link to PHDAct amendment
http://www.legislation.govt.nz/bill/government/2013/0118/latest/whole.html
and the RIS •http://www.health.govt.nz/familycarersris
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The 2013 Budget delivered a miserly response from the Government to
the outcome of the Appeal against the 'Famiy Carers Case".Instead of merely removing the prohibition against the payment of
family members providing care for those eligible for Home And
Community Support Services via MOH: Disability Support Services, the
government passed, under urgency, with a heavily redacted Regulatory
Impact Statement, the ammendment to the Public Health and Disability
Act.This amendment made legal the policy that had been deemed illegally
discriminatory by the Human Rights Review Tribunal, the High Court
and the Court of Appeal.https://www.google.co.nz/#q=i+think+national+has+just+broke+our+constitution
This 2013 Budget had a joyous announcement of 23m per year extra for
paying some family carers under a new operational policy.http://www.beehive.govt.nz/release/92m-pay-family-carers-disabled-adults
This new operational policy was released in October 2013...allowing
payment to 1600 parent carers. This scheme is heavily restrictive,
impossibly complicated and quite possibly breaches employment
regulations...but section 70E of the PHDAct amendment prevents any
legal scrutiny of this by the Tribunals or Courts.Unsurprisingly, less than 10% of the prospective 1600 parents have
applied successfully for payment under this scheme.http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11240668
What a pity the governments largesse did not extend to increasing the
accessibility of this miserable response to over a decade of battle
between disabled and their family carers and the government.And yes, Russell, Disability services do seem to miss out....looking at the Vote Health Document
http://www.budget.govt.nz/budget/pdfs/estimates/v6/est14-v6-health.pdf
it appears that expenditure is expected to be more or less static for the next 3 years.
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http://www.radionz.co.nz/news/national/244169/english-standards-not-dropping-union
link to steven crawfords post,
you're welcome!
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Access: Disability Stakeholders, in reply to Angela Hart,
and Martin Sullivan.
Angela...I love "PLOD." Seriously needs to be on the alphabet soup list of other 'sector' acronyms.
Martin....the 'continuum', I believe is wedge shaped, with the" altruistic services & people " and the very thin end.
I'm currently working on an acronym (because we're nothing without them!) to describe those organisations receiving government funding to provide information, support and advocacy for those in the 'sector', both disabled and carers, who end up being merely cheap PR to sell new government initiatves.
"Judas" perhaps?
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Access: Disability Stakeholders, in reply to Lucy Telfar Barnard,
Or when the spouse or partner of a disabled person avoids risk so they are fit and able to continue giving vital support.
Or when spouse/partner of disabled person with risk- taking tendencies tries to mitigate the risks as to avoid even further impairment.
Seriously though...Kiwis do not have a very good track record for avoiding risk to their children. We drown them and run over them and fail to put them in appropriate restraints in moving vehicles. We send them out into to big bad world to make their own choices....and some live to regret their decision not to place firmer boundaries in place to keep them safe.
How many times have we seen grieving parents fronting cameras pleading with the rest of us not to make the same mistake?
Yet, those of us who have always acknowledged risk....and impressed upon our children the safety messages are accused of being "helicopter parents"...always hovering protecting our children. None of us can win.
In my experience, which is considerable, most parents of children with disabilities have had to develop a heightened sense of risk for their children. The consequences of failing to recognise the risks and mitigate them can be fatal.
I think if we can be aware of the risk of being over protective (soley because the loved one is disabled) without going too far in the other, more permissive direction, balance can be acheived.
More discussion needed methinks.
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Access: Disability Stakeholders, in reply to Sacha,
Sacha...I confess to feeling more than a little sensitive at the moment, having be cast forever into the lowest section of NZ society...ie; those denied the right to take their most significant issue to the courts, by virtue of the PHDAct amendment.
I have spent the past three years trying to identify the various competing interests influencing the government response to Atkinson and Others v. MOH.
Yes, there is the message being put out by some in the sector that paying family carers will place the person with a disability at risk of abuse, neglect and exploitation...that we will use the disabled child/parent/spouse as a 'meal ticket'.
Some will. But most will not. And we had much needed support from the likes of the Medical Association and the Disabilities Commissioner.
Both of these people also drew attention to the less than optimal care from the contracted providers...the "professionals".
Again....there is plenty of evidence to support the lack of confidence that many disabled people have in those providers. That many parents, children, and spouses and partners of disabled people have in those providers.
Yet, those providers have had their businesses protected by the amendment to the PHDAct and the diabolical Funded Family Care scheme. Cabinet dscussion papers suggested that up to 60% of those eligible for funded support would choose family carers if given the choice. Big hit for those making a healthy profit/surplus from their lucrative government contracts...contracts that do not seem to demand that they do not cause the deaths of their disabled clients .
http://www.stuff.co.nz/national/health/9981142/Anger-over-lack-of-charges
Yet, these businesses...with a proven crappy track record....enjoy a much closer relationship with, and much more respect from, the major DPOs.
So, that was why I was gratified to see "family" ahead of service providers on your list.
A bit pathetic, I know. But I'll take it as a little win.
The "lol" is there to soften my tone...I do come across as a little stroppy!
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Sacha...."Service providers deliver a variety of services focused on the immediate needs of disabled people and/or families, often focused on particular impairments. These are the mostly non-profit organisations familiar to the public over decades, such as CCS, IHC,...."
Idea Services (IHC) were paid over $240,000,000 for providing 'services'...and made a ...no, sorry, had a surplus, of $150,000,000 for the same year....if the Charities Commission website is right. I know what I am going to be reincarnated as.
Having said that...thanks for putting families of disabled people in second place rather than at the bottom of the list.....after the service providers.
Seriously appreciated...lol.
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Cause and Cure and Care...
Hmmmm.
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.
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Access: Who Are Disabled New Zealanders?, in reply to Sacha,
My partner and I have the advantage of having spent about eight years after he had to stop working providing care in our home for disabled children and young people.
A wide range of disabilities/impairments/conditions...whatever is the correct terminology today!
Our conclusion? MOH:DSS must, and I mean MUST, start doing what it was always supposed to do from the dawn of the NASC era, and start treating disabled people on an individual basis. Individual assessments. Take that person...assess what they can do, what needs doing for them, what is needed in the way of support to keep them healthy, safe, and having some sort of quality of life.
ACC(bless them, for all their sins) have a very good assessment system for those in their Serious Injury service.
Raging debates about 'models' of disability have not helped the assessment process...avoidance of words like "needs", "supports", "care"...
The reality is...as Our Leaders are so fond of saying....some people will always need a high level of hands on care and 24/7 'within earshot' support.
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Access: Who Are Disabled New Zealanders?, in reply to BDB Inc,
Oh boy...do we know that "Look".
My partner( a pre ACC tetraplegic) and I get about quite a bit....a lot in fact. Peter claims that after 43 years he no longer sees it...unless he looks, so he avoids eye contact. Some days, however, when he's in the mood, he will deliberately go out to engage with the "Lookers"....force the issue. Met a few folk who do that! We have actually done an informal survey...about 25% will see past the disability...or use the obvious disability to come and have a chat. The other 75%, and there are some very highup MOH staff amoungst them, simply cannot handle it.
I get your "zombie" tactic. We have the "Murray" tactic. You can just tell, by looking at them, that it is simply not worth the effort nor the oxygen to try and engage with them, to try and get them to understand....because they simply do not have the capacity to do this. Which is probably how they got the job in the first place.
Oh dear...terminal cynicism....I hope it is not catching!