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Access: Paying Family Carers - What was all the fuss about?

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  • Hilary Stace,

    Hopefully, fixing this will become an election issue. What I found interesting about the injustice of the decision last year was it was one time that disability crossed over into the legal or economic area, so more people took notice (however briefly). Andrew Geddis wrote several posts and articles which probably got to a larger audience than ever usually take notice of 'disability'.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rob Stowell,

    It's a horrible piece of legislation. Hope you are able to get on day to day. Because change is way too slow.

    Whakaraupo • Since Nov 2006 • 2110 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    What I found interesting about the injustice of the decision last year was it was one time that disability crossed over into the legal or economic area

    Because it was framed that way. We need to do that more, even though it takes effort.

    Ak • Since May 2008 • 19740 posts Report Reply

  • BenWilson,

    Very good post. It's still pretty shocking that Parliament would do this. To pass an actual law just to impose a budget constraint, on something so desperately needing more budget, and receiving so little. Quite amazing.

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Sacha, in reply to BenWilson,

    be interesting to compare coverage with the similarly anti-democratic ECan action.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Ian Dalziel,

    there is no higher power...

    ...no complaint based in whole or in part on a specified allegation may be made to the Human Rights Commission, and no proceedings based in whole or in part on a specified allegation may be commenced or continued in any court or tribunal.

    Surely that is a crime against humanity in and of itself?

    That the right to breathe oxygen is not a given, can't be far away...
    Imagine the meters!

    Christchurch • Since Dec 2006 • 7950 posts Report Reply

  • Rob Stowell, in reply to Ian Dalziel,

    Surely that is a crime against humanity in and of itself?

    It's remarkable in the way it restricts courts. The Law Society is not impressed, and planned to take the issue to the UN.

    Whakaraupo • Since Nov 2006 • 2110 posts Report Reply

  • Hilary Stace,

    Political party disability responses. See Anne's question here http://www.ihc.org.nz/campaigns/general-election-2014/

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Angela Hart, in reply to Hilary Stace,

    Thanks Hilary, once again IHC is advocating when everyone else seems to be silent. These political party responses make interesting reading. I'd swear the National Party has swallowed a spin doctor! I do hope it's fatal.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    The Abbott government in Australian has cut funding to disability projects including the Ramp Up media programme. The role of the Disability Rights Commissioner at their Human Rights Commission has been disestablished. Graeme Innes, the outgoing Commissioner in the Guardian is critical of disabling policy.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Angela Hart,

    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#TheCarersrsquoStrategyActionPlanfor2014to20187

    Lots 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.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald,

    A very quick reply to those who have taken the trouble to respond to my post. Forgive brevity and clumsiness...I am using my daughters lappy...and Windows 8...which appears to be designed by the Marquis de Sade.

    Peter and I spend most of our time in our converted Bus...travelling and freedom camping and generally living a lot more cheaply than if we were living in our house. We really enjoy this life...has its challenges...but so much better than sitting at home waiting for another financial axe to fall.

    Also, we get to have many conversations about living with disability with all manner of folk....a wheelchair emerging from the bowels of a 7m Bus tends to attract a bit of attention.

    Dear Uncle Tony and Whaea Tariana.....things are NOT all rosy in the disability garden, and you guys need to lift your game toot sweet.

    Also, Whaea Hekia, we have been in the Far North for the past couple of months....YOU need to lift YOUR game too. No surprises when listening to the school principal from the north on Natrad this am. (sorry, I dare not even attempt to find a link)

    The Numbers....when we get back to our non mobile home (today, maybe) I will attempt to put together Part Two of this thread. Interesting documents out there that shed a little light on where the MOH got the numbers from, and how the numbers were significantly modified along the path to the PHDAct legislation.

    Finally....I may have to give a bit of an apology to Tariana Turia.

    Peter and I had an unplanned conversation with Ms. Turia the other day.

    We found her to be attentive, informed and empathetic with the issue under discussion at the time.

    I have been quite scathing of her performance as the Minister for Disability Issues....perhaps I have been a tad harsh.

    I stand by my assertion that her speech writers do her no favours with the pap lines and stock responses, but kanohi ki kanohi, I got the feeling that she actually gives a shit.

    Maybe outside of Parliament?????

    Again, thanks to those who responded to this post...I will work on part 2.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Christine Peet,

    What was of concern for me (and still is for those living with a disability such as myself) is what happens when those looking after their family members are no longer physically able to (or have passed on) I have spina bifida and am in a wheelchair and am lucky to be living with my partner and get support from a caregiving agency. Prior to this my mother helped me. When I lived at home with my parents we had real fears of what would become of me once they passed away. The caregiving isn't always ideal but I feel secure and happy knowing that I don't always have to rely on mum now. There definitely needs to be more qualified support people employed, and robust training to ensure loved ones are well supported.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    Well said Christine, and I couldn't agree more.

    I have had numerous conversations with parents of children with significant care needs and all express the same concerns. "What happens to Fred when I'm gone?"

    No one is going to care for you more than those who care about you.

    Providers appear to be under no obligation to meet even minimum standards of care, and can even cause the death of disabled people without being held to account.

    This must change. Failures of service provision must attract penalties and cancelling of lucrative contracts for serious, avoidable harm should be the norm.

    Serious failures resulting in death have to attract criminal charges.

    Only when people with disabilities know that their lives are valued will they be able have trust in non family care.

    I applaud the drive by DPOs to encourage young disabled people to live independantly, cut the apron strings and make their own way in the world.

    However, for some disabled "ïndependance" is merely a concept, their care needs are such that they will always require the assistance of another person.

    In such cases, the disabled person must have the RIGHT to choose the people who provide the necessary care.

    Thats what the Family Carers Case was all about.

    Thank you for responding Christine, I look forward to your next post.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Christine Peet,

    In such cases, the disabled person must have the RIGHT to choose the people who provide the necessary care.

    I had the right to choose which agency I went with, however, not the 'people' that come to me. Luckily for me I have a voice and have for the most part been able to change things if it doesn't work for me. Some don't have that luxury to be able to speak out and it's a real concern.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Angela Hart, 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.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    This might be of interest to you Christine,

    http://otago.ourarchive.ac.nz/bitstream/handle/10523/2378/vandenheuvelmariae2012mhealsc.pdf?sequence=1

    NZ research with those with Spinal Injuries....(or any kind of spinal cord impairment!).

    The best bits are the comments from the disabled people.

    And, give some thought to IF as Angela Hart suggests. The best benefit of IF (I am told) is that you can pay your (best) carers at a higher rate than the agencies pay.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Only when people with disabilities know that their lives are valued will they be able have trust in non family care.

    To be fair, that goes for family-provided support as well.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Christine Peet, in reply to Rosemary McDonald,

    This was very interesting reading (haven't read all of it) but read the comments and can relate to much of it!

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Christine Peet,

    Angela - I went down this track when I lived with my family. Agencies are the more secure way to go for me. If a caregiver wants to have a holiday or is sick then at least there is cover.

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    read the comments and can relate to much of it!

    I had a feeling you might!

    So often we can feel that we are alone in our experiences, alone in our fears, alone in our troubles.

    Not so.

    In response to yor post to Angela (if I can butt in!)

    "Agencies are the more secure way to go for me. If a caregiver wants to have a holiday or is sick then at least there is cover."

    Peter was asked why he didn't take the offer of IF, with the condition that he did not pay me. His reply was basically the same.

    His cares needs are such that extensive training would be needed for any staff he hired....and much of this training would need to be done by me. If those staff could not handle certain issues, or failed to show, or had to leave early.....yep, down to me again. An agency who has signed a contract to provide care is obliged to at least send someone to a client.

    Even when ill health mean't that we needed help from an agency....we could not find any here in the Waikato willing to sign a contract to provide Peter with carers.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    NZMA Submission Paying Family Carers.pdf

    Only when people with disabilities know that their lives are valued will they be able have trust in non family care.

    To be fair, that goes for family-provided support as well.

    And we must, of course, be fair.

    What would 'being fair' look like when comparing family and non-family care?

    When it comes to paid care, I'll leave it to those professionals who see the best, and worst, of both. See attached NZMA Submission Paying Family Carers.pdf

    And since I will never be a Funded Family Carer, subject to all the conditions and constraints of the scheme, I'll leave it to those who are to explain how "fair" their treatment is compared with the non family paid carers.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    What would 'being fair' look like when comparing family and non-family care?

    What value does the disabled person believe is reflected in their experience after informed reflection about their options?

    The current system doesn't usually enable even that, let alone deliver on those considered preferences. I know it makes good parents mad, just like their children.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    I'll leave it to those professionals who see the best, and worst, of both

    That's a great submission - did you help them?
    Right off the mark,

    The same mechanisms to ensure quality of paid care should apply equally whether the carer is a family member or someone external to the family.
    ...

    To suggest however that there is a likelihood that such risks will increase because those already providing care are paid for that care is unsubstantiated and disrespectful to the families involved.

    Ak • Since May 2008 • 19740 posts Report Reply

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