Dara McNaught: Home-care of the disabled should be properly paid

NZ's pay for someone caring for a disabled person works out at $2.69 an hour. The UN won't be impressed. Photo / Getty Images

The Government is due to report back to the United Nations shortly on its progress (or not) in implementing the Convention on the Rights of Persons with Disabilities, ratified by New Zealand in 2008. New Zealand has not fared well in previous reports.

The Ministry of Health's disability support services are currently being reviewed. The ministry is famous for its history of providing grudging support for families caring for a disabled person but there is one service, the carer support scheme, it really wants to keep under the radar because the conditions of employment are so punitive.

I was recently asked to help out a friend as a Support Carer. She was exhausted by caring for an increasingly dependent family member and was hoping she could have a break now and again. She had no family who could help and was reluctant to leave her beloved daughter with a stranger. She was hesitant to make the request because of the level of payment provided by the ministry.

If she was hesitant, I was astonished. The maximum rate, $64.50 for 24 hours, works out to be $2.69 per hour. Yes, you read that right – and as I recall has barely changed in over 30 years.

Let's be clear, this is a government department that pays Support Carers $2.69 an hour for work that can include dressing a person, giving medications, preparing food and feeding a dependent adult or child, toilet assistance and other personal cares, some of which may be quite challenging. Especially if there's confusion such as dementia thrown into the mix.

I remember arranging respite care for primary caregivers under the same scheme back in the late 1970s when I worked in community health. Nothing else about the scheme has changed either. The Support Carer is still unable to claim mileage. So a return trip of 30k, at the IRD rate of 73c per kilometre allowed for mileage expenses, works out at a $21.90 cost to myself.

To add further insult, IRD requires the hourly $2.69 to be taxable. For a five day week working 24 hours with no breaks, the total payment is a taxable $312.50.

How did this situation arise? The Carer Support Scheme was set up to enable fulltime caregivers of children, or adults who have a physically or intellectually disabled or otherwise dependent family member of any age, to have 28 days respite each year (or 56 half days if they so choose) to be used at the caregiver's discretion.

This could be to visit friends, to have a day out and perhaps go to a movie, or attend a family celebration, or their own medical treatment, or even a week or two's holiday. Normal stuff that we take for granted.

There is technically an alternative, at least for relief of a week or more. Care doesn't have to be provided at the primary caregiver's home. The dependent person can be booked into a residential care facility (rest home) for a week or two or four, if the carer can find a bed available.

Good luck with that. Back in the 70s, the big rest homes run by the churches had a strong ethic of community service and ensured respite care beds were available. But they're now owned by corporate bodies driven by profit, which means they rely on continuous occupancy that respite care on short-term bookings cannot provide, and on minimising costs – laundry, cleaning etc – which increase with short stays.

That service is now rarely provided. And the smaller rest homes simply cannot afford to absorb those costs.

In the event a bed for respite care can be found, the subsidy paid to the residential care facility is $1060 per week, or $152 a day. For providing the same care in the person's home, the payment is $64.50 – less than half. Either way, it's unrealistically low.

The ministry states the $64.50 (or $32.25 for a half day from 4 to 12 hours) is "a subsidy to cover some of the costs of using a support person to help a carer take a break from the caring role". So the ministry position is that the primary carer is expected to foot most of the bill and the ministry is just helping out.

The reality is that most fulltime carers are wholly dependent on a benefit for the household income, and are usually living on a financial knife-edge where a new car tyre or urgent dental appointment creates a crisis, so there is no money available for any additional payment towards costs. The "subsidy" is the only payment possible.

If you think that the ministry is operating a sleight of hand to avoid responsibility for fair payment to relief carers, you'd be right. It argues that this is not a contractual arrangement between the Support Carer and the ministry but is a matter of employment between the primary caregiver and the Support Carer, so the primary caregiver is the "employer".

But the ministry sets the rules and contracts an organisation to make the assessment as to whether a person qualifies for Carer Support on the basis of "ensuring that the support and services allocated to you are fair, and fit within the disability support services budget", according to the Ministry of Health website.

And the ministry must approve each claim form, and it makes the payment direct to the Support Carer (or reimburses the primary caregiver if she or he has already paid the worker).

As a measure of the value placed on women's worth – to no one's surprise, both the primary carer and the support worker are most often women – there does seem to be room for change.

As a state service, funded by us as taxpayers, the Ministry of Health is subject to the policy decisions and related funding determined by the Government of the day. It is not likely Jacinda Ardern's Government has been made aware of the failings around Carer Support. Once it does know, with its focus on human rights for the most vulnerable, it would be surprising if it failed to rectify it.

Perhaps raising the rate to parity with commercial operators providing the same service would be a good place to start.

• Dara McNaught is a freelance writer.