That’s a great submission – did you help them?
Right off the mark,
No, but reading this, and the few other submissions that were available on the net at the time certainly provided this family carer with much needed bouyancy at a time when I was feeling isolated and alone and drowning in self pity. Shame on me.
This particular submitter got it.
You have highlighted the key phrases Sacha.
This was much needed validation and vindication for those of us who do provide a high level of care for our loved ones, at a time when the 'establishment' was expressing concern at the Appeal Court decison and making comments such as this:
Stupid me already knew, from direct feedback from medical professionals in hospitals, that in general the medical fraternity already held the care from family in very high regard....having had to deal with the negative impacts of provider care.
However, such was impact of the nasty and downright malicious statements made during the three Atkinson hearings against family carers...I admit to having lost a little perspective.
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.”
When families and their disabled members want to care for each other, why on earth should there be additional financial penalties for that choice?
I was chatting to my partner about this topic and asked him "if I had no other person to look after my needs, ie no agency, no parent/family member willing/able, and you were my only option, would you want to be paid to look after me?" An emphatic yes. He works full time, as do I and said to me it would hinder his employment. Fair enough I say. My mother on the other hand, never wanted to be paid to look after me. She was a stay at home mum and they were financially able to afford one income. I would have supported her being paid.
Thanks for that Christine, and you've summed it up quite nicely. In order to give the level of support a family member needs, paid employment outside the home becomes un- doable in many cases.
Spouses and partners unable to work because of caring commitments do not qualify for for the DPB Care of Sick and Infirm. (Lovely language!) That was the pre- reform benefit. We qualify for the SLP...which is tied to the disabled partners benefit....and both benefits are affected by earnings of the other partner.
We were told by a WINZ employee some years ago that partners and spouses of disabled were being discriminated against by not qualifying for the DPB CSI....which provided a significantly higher income than what we get. He and his collegues could think of no valid reason why this policy was in place....he encouraged us to take THAT issue to the Human Rights Commission.
Having said that....we were told by an employee from the Auckland Spinal Unit that under IF, partners and spouses CAN be paid as carers.
Funny that since the 'rules' state otherwise.
However, it is common knowledge that paying partners and spouses through IF or through a provider is/was almost routine.
Trouble is/was, it required a certain level of deceit that some of us were not prepared to involve ourselves in.
I say is/was because these árrangements are supposed to have been terminated by now.
Oh, what a tangled web we weave!
On a completely different tangent, not at all related to this discussion, I was at a cafe next to my work this week about to be served when someone pushed in ahead of me saying 'i'm in a hurry, I work full time and need to get back to work'. To which I replied 'well, actually, I'm in a hurry too... I also work full time and need to get back to work'. Perceptions...
Good on you for standing up to the ignorant so and so!
Peter too worked fulltime for over 30 years after breaking his neck, as did many of the pre - ACC tetraplegics.
I vividly remeber a visit to Burwood Spinal Unit in our Bus some years ago. A fairly newly injured guy wheeled over and with all seriousness asked if ACC had paid for our Bus.
When Peter replied, "No, I worked fulltime and saved up...", the guy got the pip and stalked off!
Two completely different cultures in the NZ disabled community.
DPA NZ and friends are going to present their petition against the PHDAct amendment to Catherine Delahunty at Parliament on Tuesday 22nd July. Around lunchtime, bring your placards.
In my opinion this is too little too late, and smacks of hypocracy and inconsistancy.
More mixed messages from the government funded disability leaders.
This was the last active Access thread, so..... I saw this in the Herald and thought it looks good. I wonder if anybody knows any more about it?
This was the last active Access thread, so….
"active" might be a bit generous Chris....more like twitching in its death throes...
However...funny you should post that, someone else asked me about this the other day.
I don't know much about this particular venture, but its sounds very much like the Local Area Coordination program, evolving from the New Model....see here
I'd be interested to know a bit more about it too.
While we are all trying to talk our way through anger/grief/despair over the election result, trying to find a creed to take us through the next three years (without destroying ourselves with bitter debate)...a little can is being kicked down the road.
In June last year, hot on the heels of the PHDAct(2), a lady called Margaret Spencer took a case of discrimination against the Ministry of Health over payment for the care of her adult disabled son.
Margaret Spencer's lawyer, Jim Farmer
" said there were "many shocking aspects" to the case.
These included the Government's decision to ignore court rulings, to take away the right to recompense and the ouster condition in a new "discriminatory" law passed on family caregivers - which allows minimum wages for 40 hours per week - preventing challenges to the law. "
In a statement to the Court, Spencer said, " I stand here for democracy,
And this is not a democracy as a democracy ensures equality of rights. This is a dictatorship where the Government is trying to gag the courts."
Couldn't have put it better myself.
And blow me down....if the Judge didn't rule in her favour....
Of course, there was the usual debate over the significance of this case....
With Geddis saying... "the new ruling will not open the door to more legal action because legislation introduced in May means only Mrs Spencer and the nine other claimants are exempt from a prohibition on any future legal challenges.
"The Government has passed new laws, passed new legislation and closed off any avenue to challenge to those laws - so for the people who aren't Mrs Spencer, well, tough." (Gee, thanks Andrew, mate.)
and Joychild (the barrister for the original Atkinson plaintiffs) saying " the court ruling may open the door for more people to seek compensation for past care of their adult disabled children."
Of course, the Government are appealing Judge Winkelmann's decision.
The hearing is at the Court of Appeal in Wellington on the 22nd and 23rd October.
Peter and I have our Bus pointed south as I type.
As with the previous hearings regarding this case, we feel it is important to show some support and solidarity with the plaintiffs and the legal teams working on this issue.
It also does no harm to have people directly affected by this legislation sitting in front of the Bench. Keeping it real.
The Spencer case involved some rather interesting discussions.
I have the transcript of the High Court hearing...I shall try to re-read it over the next few days...but it is very _wordy_!