The Consultation on Paying Family Carers to Provide Disability Support; Why I’m Not Impressed.

The New Zealand Government decided not to appeal the court decision that ruled in favour of the Ministry of Health paying people to care for their own family members (a decision delivered in June this year). That is to say, the Government has decided to allow family members to get paid to care for their own children, instead of the previous status quo of specifically excluding family members from this pool of government funding.

Before we get too excited about how these changes will affect us, keep in mind that they are only looking at allowing payments to carers of adults with disabilities (despite the fact that the reasoning in the ruling itself seems to apply wider than just to adult dependents); those of us caring for younger disabled children, are still evidently going to be excluded from accessing the pool of funding (this “employment”), merely on the grounds of our family status. For example, there is a significant pool of funding that I am allowed to use to pay strangers to care for my son, but that funding cannot be granted to myself or my husband (even if we were in the position of having to give up our jobs – as I once was – solely in order to provide appropriate care to a very high needs child).

The Ministry of Health is calling for submissions on how best to implement these changes, and is running “workshops” around the country; details on both are available via their website. The closing date for making submissions is November 6th, 5pm.

There are some key questions they are seeking answers to (italicized sentences are quotes from their official submissions form):

What do you think is the best way to ensure that disabled people’s interests and quality of life and those of their family are protected under a policy allowing family to be paid for providing support?

That is to say, they are concerned about monitoring that both the disabled adult and the family are being looked after under the new arrangement. They make various suggestions, all of which read like extra layers of bureaucracy based on the presumption that parents don’t know how to adequately care for themselves and their child.

If I sound a little bitter and cynical, it’s because I am: Parents have been caring for their disabled children all their lives – unpaid – but now that they can get paid the Government is worried it’s not in the best interests of the disabled adult and the carer themself!? I get the concern, but I think it’s over-stated and somewhat insulting.

They then ask:

Do you generally agree with a targeted approach to paying family carers?

The “targeted approach” they’re referring to, is about introducing criteria that means only a subset of families who currently qualify for these support payments, would actually qualify for personal payment under the new payment scheme. It’s a cost cutting measure (and they admit as much).

Again, I’m unimpressed. What this amounts to is the Government found it suitable to pay strangers to do the work for these families, but now that family member’s can be paid too, they want to limit the group who qualify. So there are, it would seem, still going to be significant numbers of parents who cannot receive these payments, even though they are the relevant group of people the court ruled in favour of back in June.

I’m a bit bamboozled too; if the funding pool per person was already limited (it was never an endless source), then why now further limit the type-of-person (ie, “family member”) who can access that fixed pool of funding? Is that an admission that the pool of funding was regularly under-accessed, and now they’re worried families will actually utilise what’s available? As a family that regularly under-accesses the available funds because we can’t find adequate care and carers for our son, this wouldn’t surprise me. Or are they admitting they’re going to significantly extend the funding actually available (and if so, why, when the court decision was about being excluded on family status, not about there not being enough funding allocated?)

They go on to suggest some criteria for the targeting, including: the remoteness of the disabled’s adult’s home; cultural or religious requirements; high or complex needs; and safety and well-being issues if the care was in a non-family member’s hands. As far as suggested criteria go, they seem quite reasonable. Though it’s hard again not to imagine extra layers of bureaucracy introduced to apply and monitor the criteria.

In so many of the suggestions made on the submission form, I can see piles of much-needed funding disappearing into red-tape instead of getting to the families that desperately need it; frankly that’s the way it already is, all of this looks to be much more of the same blundering mess.

Which of these two ways of paying family carers for providing home and community support services do you generally agree with? The two options they suggest, are paid as employment, or paid as an allowance.

Then they ask for details of what family members should be paid for. Three suggestions are provided: (1) The family determines how much unpaid support they should provide, (2) a NASC (Needs Assessment Service Coordinator) determines how much unpaid support a family should provide, using a principled approach, or (3) a NASC uses a generic approach whereby each family is meant to provide the same amount of unpaid support.

This is all getting at the point that the Government expects all families to do a certain amount of unpaid work in the care of their children – evidently, even their adult children – and are trying to quantify how much that should be (and are dragging NASCs in to help figure it out, I am not a fan of our local NASC, so I hate to think of them receiving even more power than they already wield).

They offer up some potential principles for NASCs to use in making this decision. It’s a lengthy list of options that I won’t reproduce here. Basically it includes comparatives to non-disabled families, and the comfort of the disabled adult and the family member, and “paid support should not displace support that is provided by a family carer freely and willingly, and that is within their capacity and ability.” Etc.

They also ask for a clear quantification of exactly how many hours per week a family member should be required to provide unpaid support. Around about this point in the questioning, you really start to think it would all be a lot better if they made it a simple allowance-per-family rather than a paid-per-hour-employment system. Which brings you nicely to thier next question about whether it would be best to create an allowance administered by Social Welfare, rather than a paid-carer system per se: “The payment would recognise the contribution family carers make in supporting disabled people, rather than reimbursing them for providing home and community support services. Under this option, no other form of payment would be available.”

Under the allowance option, they ask whether you’d want the payments tiered to need (again, as assessment by a NASC), or a flat rate (again, eligibility assessed by a NASC). Personally, I find the allowance option somewhat attractive, but I’d like to see the flawed NASCs left right out of it, preferring whether someone meets criteria or not to be determined by the medical specialists who diagnose or deal with the individual in the first place, who perhaps go through a check-list (just like they currently do for the Child Disability Allowance), thereby removing costs, time, and bureaucracy in the process. It is this point which most tempts me to write a formal submission to the Ministry of Health.

Their next question just puts the boot in: The Government would like you to tell it where it’s meant to get the money from. It wants you to decide who else in the disability system should go without so they can do the legal and moral right thing of allowing family members to access these payments that they should have never been excluded from. Frankly it reads like someone who lost a court case about human rights, asking those who won the case to tell them how they’re meant to pay to remedy the breach of those rights. Oh wait, that’s exactly what it is.

They offer up suggestions, like strict criteria for who qualifies, low rates or payments to allow them to reach all concerned, and “reducing the level of disability support funding allocated across all disabled people receiving Ministry funded disability supports.

And that’s where the official submission form ends: Pointing out that doing the right thing costs money.

I don’t mind the introduction of stricter criteria, I don’t mind that they can’t afford to pay parents 40 hours of top-end rates to care for their disabled children. I do care about the legality and morality of what they were doing before (the system was always an unjust horror, still is, and foreseeably still will be after all this), and I do care about the threat of reducing the already minimal funding allocated to those with high needs in our country.

We’re in an economic crisis, I get it, but we’re talking about people who can’t hold down paying jobs because they’re caring for their disabled adult children. We’re talking about a Government that will pay complete strangers to care for your disabled children, but not you, solely on the grounds that you’re related to them (regardless of your own qualifications, experience and training). I’m not convinced that the Government has appreciated the gravity of what they were doing wrong and how many lives it was ruining, neither am I convinced that their consultation will churn out a better future for these individuals and their families.

I very much would like to be wrong.

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8 Responses to The Consultation on Paying Family Carers to Provide Disability Support; Why I’m Not Impressed.

  1. Hilary says:

    Very good summary, thanks

  2. seventhvoice says:

    Thank you for this brilliant post describing the insanity that parents of children and adults with disabilities are forced to undergo in order to attain any financial recognition for the endless hours of care they provide. I still find it soul destroying to think that a complete strangers ‘care work’ receives recognition while parents, who are on hand 24/7, receive next to nothing for their endless hours of care. As always it seems to come back to the fact that over 90% of familial carers are women. Our society has always expected to harness the ‘care work’ of women for free. In this modern, free market economy there is absolutely no logical reason why non-familial ‘carers’ should be seen to deserve payment for their ‘work load’ while family members receive nothing at all. The premise that the whole ‘care industry’ is being based on is nothing short of unjustified, discriminatory, madness.

  3. Rosemary McDonald says:

    We have attended three of the ‘workshops’ so far. We also attended the High Court Hearing and the last day of the Appeal Court hearing. We have written, phoned emailed and sat outside the Beehive till spoken to by MoH. We have had what we intend to be our final contact with our local NASC who saw fit to slash our allocation of Carer Support by half…with no consultation.

    So far from the workshops…..NO to a welfare payment.
    The NASC system (if it can be described as such ) is flawed, inefficient, inconsistant and frequently leaves the disabled and thier families in tears. We were pleased to note that the facillitators were somewhat surprised by the level of antithesis towards the NASCs.
    Funding should be through IF…and a surprising number of folk would bypass the services of the IF Hosts if possible.
    The Targeted approach…or the exceptional circumstances…
    also a resounding NO…too dependant again on the assessment of the NASCs (there is a theme here)

    We were concerned at the number of ‘service providers’ at the workshops. Some barely able to contain their ‘concern’ that family could be paid…eventually was driven to point out to one group of providers that the vast majority of family carers had had very negative experiences with agencies..and that many were not prepared to risk the safety of their loved ones to the so called proffessionals.

    One good thing from the workshops….the chance to hobnob with other disabled and their family carers. Hugely comforting to hear the same stories and concerns from others….regardless of the type of disability affecting their loved ones.

    We are committed to making as much noise about this issue as possible. We MUST NOT let the Govt. water this down to some sort of allowance/welfare/minimumwage for restricted hours deal.
    Be advised…our competition for this funding are the service providers…they are amalgamating and consolidating…our gain as paid family carers will be thier loss…this has happened overseas.

  4. BusyMumof1 says:

    Thanks for that Info. I too am not a fan of our local NASC, (which I won’t name here) either. Even though my son, who also has ASD is now 5 and a half, we still only get 12 days per year for respite and supposedly we can no longer get extra days based on his ASD diagonosis by itself, but he has to also have another impairment alongside it, and has to now have a assessment and cognitive tests done by a pyschiatrist. It has stressed me out majorly, and I too ended up reduced to tears. It is not having an ASD child which stresses me out anymore, it is the lack of empathy, understanding, and redtape mentality from the organisations which supposedly are meant to help us. I am even more worried on how this is going to impact on families who have disabled family members who are under 18, even though I think that is is only fair that the families of adults with disabilities deserve to be acknowledged and paid to provide the care for them, rather than outside providers.

    • Indeed, the very organisations that are meant to support and guide us, become trials of red-tape and avoidable stress. Many things are wrong with the current disability support systems, and some of those problems definitely trace back to the operation and involvement of NASCs.

  5. eyesalve says:

    Just a thought…consider carefully before you make a decision to bring a disabled child into this world (if you had the choice)…consider that it will only get harder and after your consideration make sure that you have a good support network…because you are going to need it..count the cost and that advice is for life in general.

    • Eyesalve, I will give you the benefit of the doubt, that you don’t realise the fact that autism can’t be identified in the womb, that even if you could you couldn’t figure out how severely it would impact a child, that you have no idea how much thought goes into having a child at all let alone choosing whether or not to risk having a disabled child, that you haven’t thought about the fact that disabled children are still human beings with a right to life, that you are completely unaware of so many others truths and issues involved in that complicated decision about whether to have a child at all, let alone “choosing” to have a disabled child. Your comment is astoundingly ignorant and remarkably offensive, but your tone shows you don’t realise why or how since you appear to mean no harm. Please think twice yourself before advising someone you’ve never met whether they should breed or not.

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