“Carer Support Days”: A Flawed and Failing Support System, that invites Fraud

There is $2280 of funding, aimed at supporting myself and my husband as carers of a disabled child, that we don’t access each year. We didn’t access it at all last year, we’ve just been told we’ve been granted it again this year, but we are extremely unlikely to access it this year either… unless we set out to commit fraud to do so. Fraudulent claims to access the funding are rife, and with good reason: The funding rules are confusing, counter-intuitive and unjust.

The support system I’m talking about is “carer support days,” funded by the government and meted out via various regional agencies (which themselves are frequently criticised for unjust and confusing practices, I’ve written a previous post about one such incident). The support packages are parceled as “days” but actually represent fixed amounts; for example, my family is allocated “30 days” a year, at $76 a day, meaning a potential total claim pool of $2280. The money can be claimed in half day or full day amounts. A “half day” is for 4 to 8 hours of work, a “full day” is 8 to 24 hours (yes, apparently a full day is more than twice a half day). Confused yet? It gets worse.

The subsidy covers care provided to the disabled child specifically in order to give the carer a break (thus “carer support”), but cannot be used to pay immediate family members or people who live at the same address as you. It cannot be used to pay anyone while the carer is working (ie you can’t pay someone to care for your child while you are in paid employment during those hours). The funding is paid either directly to the carer – if they have paid the worker themselves already – or to the person providing the care. If the funding has not all been used at the end of the year (when a year ends differs from family to family), then the left-over days expires, and a new amount of days is allocated (or not allocated, depending on the child’s situation).

There were a couple of years that I did access the funding. Every time I filled out one of these horrendous forms, I struggled. They are confusing forms, that took me ages to work out in the first place, and then a rather amazing amount of time to fill out each time I wanted to lodge a claim. Claims are slow to be processed, when they get processed at all. Over the years I had a number of forms returned to me because of various minor technical errors, meaning I had to re-do a form and contact the original care provider again (if possible) in order to be given the funding. This is from someone who has an Honours Law degree – the Honours in the area of contract law. If I struggled with these forms, imagine how other people get on.

In fact, I can tell you how other people get on. I know more than one family who were so confused by the forms that they never lodged a claim, even though the desperately needed the funding and could have been legitimately using it. I know families that have used the funding to pay for nappies and various other physical items, not realising (and in one case, not caring) that it was against the rules. Some families use the carer support days to pay for attending various events and places (say, the zoo), but when other families attempt to do the same, they are denied entry and the staff refuse to fill out the forms. What you can and can’t use the funding for is frequently unclear; it can apparently be used to attend places and events to amuse the child or educate the parent, even though these aren’t clear instances of actual “carer support” that gives the adult a break from caring for the child. I still can’t figure out why certain such activities are OK and when they’re not OK, and neither can many service providers.

It is also apparently quite common that families will claim for days that have not actually been used because their year is coming to a close and they don’t want to lose or waste the unused funding, so the carer agrees to sign off on days used “in advance” (lying about the actual time and day of provided care). There is extra incentive to do this, because un-used days from previous years can apparently be used as evidence that the family does not need that allocation of days for the future.

The fraudulent practices – sometimes intentional, often not – have just made it to the national news this morning. The examples cited in the piece are more extreme than the everyday examples I’ve provided above (not surprisingly since the news piece deals with court cases), but the underlying problems are the same: That the system is confusing, wide-open to abuse, and arguably completely unjust anyway.

I say “unjust” because of the payments can’t be made to family members, which goes against the ruling recently made that excluding family members from support payments merely on the basis of them being family, is discrimination. As mentioned in that ruling, it is frequently hard for families of high needs children to even find suitable and willing carers (and the organisation that are meant to help us do so are notoriously unhelpful), so often we’re just left without any breaks from full-time care, and of course financially suffering despite the funds otherwise ear-marked to pay for such care.

But I think the injustice goes further than that. Despite the purpose of the funding, it can’t be used to pay for things that would actually make our lives’ easier in regards to our childrens’ needs: Such as nappies over extended years of toilet-training, and aids required to help our children communicate and generally get by in the world (like Time Timers). Families like mine desperately need access to this funding to help our children and ourselves – as it is supposed to do – but because of the rules surrounding it we can rarely touch it. I also think it is very short-sighted that we can’t use the funding to pay for childcare while we’re at work; we should be encouraged and helped back into the work-force, not provided funding on the prerequisite that we don’t use it while we work. Yes I understand the reasons behind the rules – as many and stupid as they are – but the reasons against the restrictions (and the consequences of the long list of restrictions), easily outweigh them in my humble opinion.

The alternative to the overly-clumsy system currently in place? That they simply trust us with the funding in-bulk, even if we must explain to them either in advance or after the fact, what the funding was spent on (ie, as long as it was spent on something to specifically make our children’s lives easier, and as a consequence, our lives easier, since that is what the funding is for). Alternately, they could just loosen the rules around use, get rid of or immensely simplify the ridiculous forms, and stop presenting the funding in this artificial construct of “carer days” which many parents and carers struggle to understand and use.

The system almost invites fraud, despite its strict rules and forms and needs assessment processes and gatekeepers galore. Rather than punishing those who are trying to access the funding they are supposedly entitled to, how about they just find a new way to make sure the funding actually gets to the people for whom it is intended? The huge amounts spent to prop-up the organisations that deny us the funding, would be better distributed to the families who so desperately need real carer support.

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13 Responses to “Carer Support Days”: A Flawed and Failing Support System, that invites Fraud

  1. Angela says:

    Hear, hear! What a ridiculous system but it fits in I suppose with all the other ridiculous administrative rubbish designed to grind our families into the ground! Wait till your wee one reaches 16 and you start the whole WINZ “Invalid benefit” debacle. Every year you must fill out forms to say “yes he still has autism!” which invariably get lost (despite the fact that you take them into the office) and the benefit is cut off and then of course there is the “we can’t discuss it with you-we have to talk to your son”-yeah right-good luck with that! Sigh…

  2. nzpam says:

    How true, i especially love your last sentence.

  3. Hilary Stace says:

    Great summary of the issues and your last paragraph is spot on.
    So many families I know (mostly families with an autistic child) cannot find any respite care at all, even though they are assessed as eligible. The options that would be useful are denied.

    • We were told respite would be great for our family (and it probably would have been, especially back when we needed it most) but we had the same problem finding suitable and available care, so we’re never taken up the option. There are clearly some serious gaps in the support system. The government and various agencies can make all the nice noises they like about what’s on offer and the funding available, but if it’s not being used because of these sorts of issues, then the families are still being let-down and still in desperate need of help.

  4. We have a very similar problem with respite funding. Some of our families have had requests for funding denied because it is used for “babysitting” and not “respite. Other families miss out because the primary carer would be at work while the child is in care (same rules as above it seems!). We have even had people from the agencies providing the funding call our parents directly – after we have negotiated on the parent’s behalf – and bully them into reducing their claim amount.

    The entire system is screwed, and often makes me want to throw things…

    • … I suppose the question is who to throw things at! I think the problem stems from the government rules / guidelines, but I suspect the issues are further compounded by in-between agencies getting in the way of the provision of services or not helping those in-need to access those services.

      So many times we as needy families discuss these problems, and every so often we find the time and energy to make complaints, but most of the time we’re all just trying to make it through each day. Those most in need are rarely in positions where they can effectively advocate for real change. It does leave you feeling quite helpless at times.

  5. The system set up to keep people from abusing the system costs as much as the allocations. Think of the confusion as “job security”.

  6. Kelly Fritz says:

    Some how me must find the energy to dispute it.

  7. Aspergirl Maybe says:

    Wow, my favorite part of Medical Assistance (US – Pennsylvania) was that they paid for my son’s diapers once he turned 3 until he was potty-trained (with the autism dx). We can access respite care but haven’t because of the difficulties with turnover in agencies – it just became more trouble than it was worth.

  8. ambhannah says:

    Hi – there is a survey (November 2013) currently being conducted on carer support…time to have our say !

    07: Ministry of Health survey on the Carer Support Subsidy

    The Ministry of Health is seeking the views of unpaid carers of disabled people who currently receive (or have experience of) the Carer Support Subsidy. You can access this survey at: http://www.surveymonkey.com/s/78B2DP3 .

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