PARENTS WHO LOOK AFTER ADULTS

I am not sure when I wrote this; perhaps 2015.

My main income over the years was as a consultant. Often I did very interesting – and for me enlightening – pieces of work, which are normally somewhere in the public domain (such as on my archive-blog) although they often lack the background of a memoir or even a column. Yet, usually I felt I could not use them as the basis of a Listener column because there might be a conflict of interest – especially that I would be advocating for one side in a dispute in which I was paid to be involved.

Such it was with a strange dispute between the Ministry of Health and a group of parents represented by the Human Rights Commission. The parents cared for disabled adults. If the Ministry provided caring support – a non-relative – to come into the home and shower them and such like, the support person would be paid. If, however, exactly the same service was supplied by the parent, the Ministry would not pay them. (If the paid carer were to marry the parent, they would cease to be paid.) The parents argued this was discriminatory and the Human Rights Commission judged their case strong enough to take it to the Human Rights Tribunal.

My involvement was because the Ministry of Health had hired an economist to estimate the cost to them if they had to treat parents fairly . In my view the up-to-$243m a year he estimated was outrageously high, predicated on totally implausible assumptions. I was employed to provide a realistic estimate based on what the parents were actually demanding. It proved to be much lower. The $40m odd would have added to a budget of over $1 billion. The Tribunal found in favour of the parents, as did higher tribunals and courts up to the Court of Appeal; each found my estimate more plausible.

Essentially my estimate concludes that the Ministry was cost-shifting from the government coffers onto the parents. That often happens in New Zealand usually without any awareness by the government that it is doing so; current budgeting arrangements mean such cost-shifting can be a useful way for an agency to reduce its outlays. An insight to the unsatisfactory system is that if the outside carer did not turn up and the parent did the showering (or whatever) themselves the Ministry did not pay them, thereby saving funds. The financial incentive was to run as ineffective a service as possible.

You may wonder whether a human right – in this case that parents should not be discriminated against by the state – should depend upon the costs of implementation to a taxpayer. An economist dithers, but the person in me says ‘nonsense’ – especially if the cost is small.

As I told the Tribunal, I had a personal interest in the decision. Dad spent the second half of his working life as a psychopediatric nurse at Templeton Hospital and Training School ,which catered (mainly) for intellectually limited people. He loved the job. It gave him the opportunity to work in a medical area; if he had had my life opportunities he would have been a doctor. Shortly after he retired, Templeton was closed down, pushing the caring role onto the community including parents – which eventually led to this case. Dad sat on my shoulder while I was presenting my evidence (and before – I always try to go beforehand to get a feel of proceedings).

The Tribunal was very proper, but the room in which the hearing was held was cheerfully shambolic. Not only were some of the plaintiffs there, but because they had no alternative, they had brought their adult children with them. Some of the disabled were bright but with greatly limited physical skills. Others were more like those that Dad cared for and whom I remembered from my visits to Templeton in my youth. Inevitably they were not well disciplined in the court room; it takes a real effort to sit through the tedium of a case, even if you understand what is going on.

When I work on such cases I try to understand the other side’s point of view. Indeed I have greatly frustrated clients by presenting it in the discussions preparing for the hearings. (This can be later offset when counsel says, ‘we were well prepared for that argument’.) To be honest, I am still unclear what the Ministry really thought. It seemed to be something like, ‘we bureaucrats have made an arbitrary decision and we are sticking to it. Anyway it costs us money.’

Curiously for the effort (and no doubt expense to the taxpayer) they seemed to be putting into it, their counsels seemed to be very young and inexperienced. I wondered if the seniors at the Crown Law Office thought something like ‘don’t be stupid’ and passed the job down. A more senior counsel would probably have presented the Ministry’s case more effectively, although the last line would surely have been ‘we surrender’.

The Ministry arguments usually bordered on the pathetic. One implied they could not think how to monitor the quality of care by parents. (Not that they monitored the quality of care of non-relatives; the monitoring which did occur – by a private agency – could have been adapted for the new situation.) I remember thinking when while the senior Ministry official pleaded such helplessness, ‘we are paying you six figures (probably three times that) and you can’t solve this problem. You deserved to be sacked’. Had I been the politician in charge I would have transferred the service to the Ministry of Social Development since the Ministry of Health was clearly not coping.

An expert witness is not involved in later stages of a case – to my regret I lost contact with the parents, sterling people whom I liked. But I did watch the case move through the system, the Ministry losing each time. After they lost at the Court of the Appeal the Minister of Health announced that they would not go to the Supreme Court but would introduce a scheme.

Which they did grudgingly. When the 2013 bill for Funded Family Care was being rammed through parliament the Minister said that it would cost only $23m a year (dunno what happened to the $243m) and cover about 1600 disabled people with high or very high needs. Two years later only 121 people qualified for the scheme. I have not seen a cost but on a pro rata basis that might amount to less than $2m a year.

That might make even my estimate seem excessive, but the new scheme seems to me to be ungenerous and excessively clumsy – even bizarre, for it was based on even seriously intellectually disabled people ‘employing’ their parent (I kid you not). I was arguing on the basis that the independent agencies which provide the non-relative carers would be able to employ a parent instead.

It is difficult to believe that the politicians – minister or parliament – were adequately supervising the Ministry. It might be they do not really care about the disabled. But in recent years one has come across other instances where deep in the bowels of a government department things are going on about which the politicians would be appalled if only they knew.

This is but one of a series of cases in which I was involved which would have made good columns but I felt unable to write. Glad to get it off my chest in a memoir (with column content) if only to salute the committed Human Rights Commission team, a wise tribunal, the wonderful parents and, of course, Dad.