Our Government appears to be laughing in the faces of the severely disabled and their carers with its new support system. As I read through the requirements, steps, and parties involved in the new system, my jaw just kept dropping open, and I kept making incredulous noises at my husband who also found the whole system absurd. You want to see just how badly a Government can misunderstand the disabled and their carers, and what lengths it will go to in order to avoid meeting its Human Rights obligations? Well then, allow me to present to you:
I will first give you just the briefest of backgrounds, because I’m eager to get to the guts of this utter farce. Basically, our courts found our Government was discriminating in a manner inconsistent with human rights, because the Government blocked people from receiving pay for work caring for family members only because they were family members. Non-family members could and would be paid by the Government to provide support, but if the person was related to the disabled individual, they were not allowed to receive the funding, which lead to many desperate families struggling to get by and finally taking the matter to the courts.
The decisions of the courts were read down to their smallest possible subset by the Government, whereby they decided they would pay only for the highest needs individuals (that’s about 1600 nationwide), and only if the disabled individual was an adult, and not at all if the person seeking payment was a spouse or partner. So only family members of highly disabled adult individuals can get paid under the new scheme. The way in which the Government wrote up the legislation outlining this caused immense upset in the disabled community and in legal circles, and with many other societal groups too. (The details as to just how bad that legislation was, can be found in my earlier post.)
OK, let’s then get to the funding scheme that has finally risen from all this. Ready to laugh or cry? Cause here we go:
The most glaring aspect of the entire scheme is the contradictions throughout, as to who can qualify for the scheme, and what they must be capable of to access the funding. Specifically, only the most highly disabled will even qualify to pay family members, but in order to get the funding they must do very many things that would be automatically outside of the capabilities of the severely disabled.
For example, the disabled person must be able to understand all their obligations under the funding agreement and all key aspects of the agreement. If they cannot, the funding is not approved. Those obligations include all core areas of employment law since the way the scheme is set up is to make them the employer of their family member, as funding is deposited in their bank account which they are then responsible for using to do the following: Pay the family member who is supporting them, pay ACC levies, pay tax, and pay the Kiwisaver scheme. The disabled person is explicitly put in the position of an official employer, and explicitly expected to be able to understand and meet all employer obligations, which are extensive and highly complicated in their own right (I’ve taught Employment Law, this stuff ain’t easy!)
Allow me to give you another example of the contradictions inherent in the scheme, because it gets worse. In order to meet the scheme requirements, the disabled individual must be able to “explicitly confirm” their preference for a family member to do the work. This is not a negotiable requirement, it is a necessary one. A secondary requirement is that the disabled individual would not otherwise be able to remain at home without the support of the family member, but this secondary requirement can be waived in exceptional circumstances where, for example, the disabled person has “significant communication issues” that mean the relationship between the family member and the disabled individual is going to be hard for other carers to replace.
But wait… how can the scheme on the one hand acknowledge that individuals may have severe communication difficulties, but insist as a necessary requirement that the disabled individual must be able to explicitly confirm a desire for an employment relationship, and must be able to show an understanding of the employment relationship..? (Answering that their guardian can give consent of their behalf is going to be problematic for many reasons, not the least of all being that the same person is likely to be the person seeking the funding in the first place.)
Hey, it’s OK, the scheme is going to introduce all sorts of mandatory support systems to help the disabled person make sense of this all (keeping in mind that even with all the support systems in the world though, you might never get a severely disabled person to be able to express and give meaningful consent to something as complex as a legal employment relationship, but let’s ignore that crucial detail for a second). The scheme makes sure there are no less than five parties involved in the funding set-up and ongoing review process: The disabled individual; the family member who will be paid; the Ministry (sure, it’s their money); the NASC (the what..? Oh yeah, those guys that receive endless complaints about the way they treat disabled families and their funding); and the “Host” (staring blankly at the screen yet?). And I haven’t even touched-on the role of “advocates” and the “circle of support” (that’s their official term by the way).
When I made a submission to the Government about how it might want to set up the scheme, I – like many others – strongly argued they not include the NASC (Needs Assessment and Coordination Service) in the process, because of the extra layer of bureaucracy, time, and money-wasting involved with their presence (quite independently of how poorly NASC currently operate). Not only did the Government decide to include the NASC, they invented more bodies that must be consulted and included (and obviously paid for somehow). Reading through the scheme is like watching money flow down a drain – into the pockets of gate-keepers, and held back from the very people for whom the scheme is meant to exist. I see a lot of job creation for anyone but the person who is after the funding; it is a maddening read.
I’ll give them this much: They do, at one point, acknowledge how complex and extensive the scheme is:
“The requirements of the FFC arrangement are quite extensive and complex and understanding the obligations and responsibilities of being an employer in this arrangement can be quite daunting.”
Yah think..?? [Head-desk.]
All of what I’ve said so far, barely scratches the surface of the problems I see with the scheme. (The fact that the wages are at minimum wage, and questions of how many situations would actually get the 40 hour maximum and whether that is a realistic maximum for full time care, are also issues upsetting the disability community already.)
It appears to be an inherently contradictory, self-defeating, bureaucracy-laden, impossible to negotiate scheme, that achieves little more than creating a bunch of new roles and organisations which will benefit far more and far more definitely, than the families this was meant to help. It’s as if the scheme was designed for not just a very able person, but an exceptionally able person who can understand more than your average non-lawyer about employment law, and negotiate a very lengthy and convoluted number of steps to get the funding (which is thereafter constantly reviewed and re-assessed). The support systems created to inform and guide the disabled individual to overcome the hurdles the scheme itself creates, do not and cannot replace the requirement they insist on: that the severely disabled individual can understand and legally sign-up to the agreement and its huge number of responsibilities and obligations.
I could give the Government the benefit of the doubt: I could say they only created so many hurdles to make sure the disabled individual has full and ongoing say in the arrangement, and as full control as possible over the funds. Which is a lovely and respectable aim, but it seems to me that they have created barriers to meaningful consent and control, not removed those barriers. And the deeper (and well justified at this point) cynic in me, thinks they fully understand just what they have done, since this is the same Government that argued against paying these people in the first place, created a tiny group of people who could ever qualify for it at the get-go, and rushed through legislation without debate, all the while loudly complaining to the courts and in the media about how much it will cost them to stop their own illegal discrimination.
I’ve said it before, I’ll say it again: I want to be wrong. I want the Government and the operation of the scheme to prove itself to be fair and well-intended, I want to smile when I hear success stories about how the desperate families are now receiving sufficient support to do the best by their disabled family members, I want to be proud that New Zealand took a step away from discrimination and towards the well-being of disabled people and their families. But I think that I – like so many touched by disabilities in this country – am going to be left wanting.