Access: Funded Family Care from a recipient’s perspective
26 Responses
First ←Older Page 1 2 Newer→ Last
-
Thank you. Interesting to hear another angle on this process that Rosemary wrote about recently.
I'm hoping people and organisations can push the government to widen eligibility and reduce the ongoing compliance effort for disabled people and our families.
-
Thanks for this insider perspective. I hope those reviewing this policy listen.
-
ffc withheldffc, in reply to
Kia ora Sacha
-
ffc withheldffc, in reply to
Thanks Hilary, we can but hope.
-
Great article about an appalling piece of Ministry of Health work.
It required a particular level of malice to construct FFC.
If nothing else, as you say, you are better off financially, and you enjoy the dignity of paid work.
-
Rosemary McDonald, in reply to
Sacha, even if they extended FFC to spouses and partners....I wouldn't touch it with a ten foot pole.
Those family carers who were being paid through 'backdoor deals' enjoyed (and some still enjoy) $17 per hour and up to at least 56 hours per week.
FFC was NOT what the case was about....the UN Monitoring Committee and NACEW got it right.
-
Sacha, in reply to
FFC was NOT what the case was about
I thought govt's fear was a precedent broader than disability services (eg: aged care) about what they could legally offload onto family/community rather than state or private service providers. Big changes in MSD services probable soon, including PPP-style long-term agreements. Clearing the decks legislatively with such a vulnerable, socially-unvalued target must have seemed the easy thing.
-
Rosemary McDonald, in reply to
Hah! Yes a bit.....BUT...the aged care sector is somewhat relying on the the WW2 generation and the Post WW2 boomers. Both groups will demand the Gummint take care of them 'because we have fought and we have paid our taxes'. And fair enough.
For the same reason ACC claimants demand fully funded high levels of home based care...they have the right because they have paid their levies.
The ACC argument collapses a little, well a lot really, when you take into consideration the fact the the claims via the Non Earners and Treatment Injury Accounts are entirely funded through the tax take...not levies.
Then you have home based care through the DHBs. Many of these people have acquired illnesses and impairments...most will have been taxpayers. Their Funded Family Care policy is MUCH more generous and flexible than the FFC for MOH;DSS.
And, my favourite point..what about Corrections? If MOH;DSS disabled are less entitled to the right to funded care because lots of them don't have jobs and there fore don't pay taxes and are therefore less worthy of state support...how come the Gummint, and society in general, seem quite happy to pay over $90,000 per year to keep a prisoner in jail? The positive contribution this group make to earn the expense for their care is ????
No, this was, in part, punishment for daring to demand equal rights.
MOH;DSS disabled are truly NZ's rejects.
-
ffc withheldffc, in reply to
punishment for daring to demand equal rights.
Lack of entitlement, that is lack of right to support services, was brought home to me at a meeting with a senior MOH person presenting on IF with respite. I used the word " entitlement" in a context where it was the correct word to use. Her face fell and she had to control her very visible reaction. When my daughter and I talked it over later we found we'd reached the same conclusion, that as far as MOH goes no-one is entitled to anything. Which effectively means they don't believe we have any right to their support.
-
Hilary Stace, in reply to
Seems entitlement is a banned word these days for all types of state support – shows how far we have come from the ideals of the welfare state.
-
ffc withheldffc, in reply to
Except for ACC and National Super recipients who are recognised as being entitled.
It seems to me that essential disability supports should be an entitlement also. -
Sacha, in reply to
what about Corrections?
Anne Tolley having had that portfolio and now MSD could be interesting when she considers the relative willingness to invest in employment/skills training.
-
"ffc withheldffc"....why are you not posting under your real name?
Just asking.
-
walrus, in reply to
As you will be aware, we cripples are expected to be ostentatiously grateful for every pat on the head we are offered, to rock no boats, bite no hands, and to swap sensible English for euphemistic jargon. The daughter in question (that would be me) is concerned about the potential ramifications of being branded trouble-makers. We are in large part dependent on the goodwill of the NASCs and the MoH in order to remain in this new Elysian lifestyle that enables such wonders as having some money in the bank to replace the next household appliance that dies, and being able to afford the petrol to get to my twice-weekly leisure activity of choice.
Beyond that, there is the more distant future. One day, assuming I don't pop off first, Mum will become temporarily or permanently unable to provide my care. I need a certain level of care by very capable people in order, frankly, to remain alive. Those same NASC and MoH people who have the power to revoke our FFC arrangement also have the power to reduce my funded care to a dangerously low level and to institutionalise. If I'm on record as being high-needs with a "difficult" family, might that not affect decision-making? I don't want to take the risk. I can't afford to take the risk.
-
Rosemary McDonald, in reply to
As you will be aware, we cripples are expected to be ostentatiously grateful for every pat on the head we are offered, to rock no boats, bite no hands, and to swap sensible English for euphemistic jargon. The daughter in question (that would be me) is concerned about the potential ramifications of being branded trouble-makers. We are in large part dependent on the goodwill of the NASCs and the MoH in order to remain in this new Elysian lifestyle that enables such wonders as having some money in the bank to replace the next household appliance that dies, and being able to afford the petrol to get to my twice-weekly leisure activity of choice.
Beyond that, there is the more distant future. One day, assuming I don’t pop off first, Mum will become temporarily or permanently unable to provide my care. I need a certain level of care by very capable people in order, frankly, to remain alive.
Thank you walrus.
Thought it would be something along those lines.
Peter wishes to thank you for putting so eloquently just how he feels.Now...are others going to read, and actually grasp the magnitude of what you so accurately describe?
"Those same NASC and MoH people who have the power to revoke our FFC arrangement also have the power to reduce my funded care to a dangerously low level and to institutionalise. If I’m on record as being high-needs with a “difficult” family, might that not affect decision-making? I don’t want to take the risk. I can’t afford to take the risk."
-
Sacha, in reply to
It's one of the reasons our community is so ineffective politically compared with others a fraction the size.
Yes sir, no ma'am, three bags full. Deeply ingrained. That or blazing justified anger, and little in between.
-
Sacha, in reply to
Has Peter found any organisations good at pushing for what he needs changed?
-
Sacha, in reply to
Thank you for contributing to this conversation. It is your life and your choices that count most of all.
-
Hilary Stace, in reply to
Thank you for expressing this so vividly. Says a lot about how unsafe the system is for people who need support. You are not alone. There are several other families and individuals out there in a similar position.
-
Sacha, in reply to
Yes. We have heard from some of them already. It amazes me how people are expected to risk so much to secure change for others. Our organisations fail us fundamentally. Shameful.
-
Rosemary McDonald, in reply to
Has Peter found any organisations good at pushing for what he needs changed?
Well. Peter, being one of those foolish people who did not wait until 1st April (Oh! The Irony!)1974 to accidently sustain a high spinal cord injury, has approached both TASC (The Association for Spinal Concerns) and The NZ Spinal Trust.
Both organisations were formed around the time that ACC Tetraplegics won their battle for fully funded 24/7 care.( Including the right to pay family.)
TASC especially is based around that particular case, with McIssaccs Caregiving Agency sponsering them. As an indication of how disconnected TASC is from the MOH;DSS spinal injured….at the last TASC getogether we attended in Hamilton, the President opened the event with a self congratulatory “didn’t we do well to get ACC to fund 24/7 care” speech. The other non ACC tetraplegic stormed out with much bulldozing of furniture to effect an exit in his wheelchair.
The President did not give a shit then, and a few months later when I raised the another issue of disparity with him he just brushed me aside.
Peter hand-wrote (no small feat for a C4/5) a letter to the President a few weeks ago to ask who within TASC is representing the concerns of MOH funded tetraplegics within the context of the new joint MOH ACC Spinal Cord Impairment Action Plan which names both organisations as being in line for funding to facilitate ‘peer support’.
No reply yet.
There is, of course the no small matter that when these ACC tetraplegics were taking on ACC for 24/7 care it was in their interests to completely ignore their older and less advantaged ‘peers’.
The fact that Peter returned to fulltime work within a year of his accident, and kept that job for the next 30 years does not go down well with a group which struggles to get 20% in fulltime work despite ACC funding workplace supports.
Peter did try to engage with the NZ Spinal Trust, and in 2009 the then-CEO was happy to print a letter we wrote about the disparities and especially the Family Carers Case.
However, when it was clear the the Gummint was going to react negatively to the Appeal Court (for the Fanily Carers Case) decision we again approached NZ Spinal Trust to see if they could be more vocal about this issue. My usual lack of tact got me thrown off their Facebook page..as…get this…’ we can’t allow any criticism of MOH because we rely on their funding us’. Somewhere in the mire of my email archive is an email from the CEO to this effect.
So, in answer to your question Sacha….
Peter and I own most of our home. (if the government had accepted the HRRT decision on 8th January 2010, and Peter was able to (openly) use his IF to pay me as his carer, we would not have had to take out a mortgage in late 2010.) We own our Bus…thanks to Peter having worked and saved hard for 30 odd years…so even if we are out on the street…we have a roof over our heads.
BUT, as walrus says, if anything happens to me….he’s up the proverbial because his relationship with the NASC and MOH;DSS has completely broken down because we have had the audacity to speak out.
They don’t like that one little bit.
Peter would be writing…but spasm prevents him using a computer keyboard.
Peter is happy to hold a sign protesting against providers who ‘neglect to death’ disabled people in their care (that was his idea), as long as people like walrus continue to use words to describe the reality of his precarious existence.
Again walrus, thank you.
-
Funded Family Care is hitting MSM this weekend with not one, but two programs discussing the issue.
TV3...The Nation on Saturday and TV 1's Sunday program.
I have no idea as to why now....but Andrew Geddis has a post up on Pundit giving folks the heads up.
In AG's latest post on this issue....A little something for the weekend ... he makes an interesting observation...
When this first was enacted, I wrote about it in a post titled "I think National just broke our constitution". That still remains, I think, the most read thing I've ever written in any format. What the government did - explicitly prevent the judiciary from ensuring that government policy is consistent with the laws of the land - was pretty jaw-droppingly outrageous.
Bold mine.
Who would have thought it???
-
Tony Ryall tells family carers where to go....pdf
Excellent piece of work ...
http://www.newshub.co.nz/tvshows/thenation/are-family-carers-getting-a-fair-deal-2016112611
Oh! The pain at seeing Uncle Tony Ryall telling porkies....and telling us where to go...
-
Excuse me, anyone out there using Funded Family Care..
I see from their 2014-2015 Annual Report that Inidividualised Funding Host Manawanui in Charge Ltd. has the Funding Advisory and Support Services Ltd. as a wholly owned subsidiary
(FASS Ltd. was set up to implement the Funded Family Care (FFC) Policy from the Ministry of Health.)
Now, all those contracting for the Mystery of Health operate under a Service Specification, and in the absence of a specific specification for the Funding Advisory and Support Service would it be reasonable to presume that their Service Specification is the same as their parent company's?
Manawanui in Charge Ltd, as a contracted IF Host, is required to facilitate the...
e) Establishment of networks for People accessing Individualised Funding to enable support, sharing of resources (such as staff, training, bureau, advice).
q) Develop networks to ensure Individualised Funding consumers are connected to other People using it and able to share supports, or provide mutually beneficial advice and support where appropriate;(Emphasis most definitely mine.)
Surely there is an obvious need for the recipients of Funded Family Care to have access to such a networking facility?
Shouldn't the Funding Advisory and Support Service Ltd., a wholly owned subsidiary of Manawanui in Charge be facilitating these?
Would it be worthwhile contacting Manawanui in Charge Ltd. and it's wholly owned subsidiary Funding Advisory and Support Services Ltd. to see if this could be arranged?
Because sure as hell the recipients of Funded Family Care need to organise. -
Another family has gone to court to try to get a fairer deal under Funded Family Care. Diane Moody looks after her adult son Shane at home. He needs constant oversight because in addition to physical problems which make him wobbly on his feet, he has the mind of a two year old in a mature body. She has been assessed for some 17 hours a week FFC for her trouble, because the MoH excludes oversight/supervision from funding under FFC, so only specific tasks like dressing, feeding can be paid for.
Her situation was mentioned on the Nation and the footage is up at http://www.newshub.co.nz/home/shows/2017/03/family-carers-fight-for-funding-goes-on.html?ref=RLrotator
Post your response…
This topic is closed.