Will family carers start saying “no” to providing “natural support”? asks LAURIE HILSGEN, CEO and co-founder of Carers NZ.
Back in the 1990s, when I was struggling to provide the hospital level care at home my partner needed, I asked the Kaitaia Hospital social worker how others managed to juggle paid work and 24/7 care for loved ones.
“They just do,” she said. And that was that.
Family caring is indeed something we “just do” when someone we care about or feel a duty toward is frail, ill, or has ongoing disability support needs.
The Government calls this “natural support” and would like family carers to “just do” quite a lot of it without adequate recognition of the impacts this can have in an era when we are living for longer in the community with higher health and disability support needs than past generations.
It’s a tension that hasn’t been well managed by successive governments and has led to the human rights court case which argued that to not pay family carers on the same basis as the paid workforce for the same work was discriminatory.
After several appeals and defeats, last year the Government agreed to a public consultation to ask New Zealanders what they thought about family carers receiving payment, and to comment on policy options that would appropriately recognise their work.
Carers participated in this democratic consultation in good faith, relieved that the years of court action were drawing to a close. Public sentiment clearly showed that
New Zealanders wanted a fair deal for carers of ill, elderly, and disabled friends and family members, a factor that Government no doubt took into account when it announced its payment consultation.
Carers were hopeful the process would lead to improved support for their role, since a choice to provide long-term intensive care is often a choice to be poor for those who can no longer manage the exhausting vortex of paid employment and round the clock caregiving.
I was a member of Ministry of Health’s Technical Advisory Group, which met a few times and explored payment options that might viably sustain carers. Although a member of this group, I was as surprised as everyone when the Government announced in the May Budget that it would pay about 1600 carers the minimum wage for up to 40 hours per week to support adult disabled children (committing $23 million per annum for four years to the new policy) … then swiftly passed urgent legislation to thwart any further action seeking payment for those caring for, say, spouses, the long-term terminally ill, those with a chronic condition, or disabled children.
While the Government has left the door open to expand its payment policy in the future, its Public Health and Disability Amendment Act (No 2) has angered carers, disability rights advocates, and the legal fraternity, which is turning a cold eye on Government’s perceived over-use of urgent legislation to press ahead with controversial or unpopular policies.
Initially, we were relieved when the Government did not simply legislate away the issues raised by the human rights case and announced its public consultation. Unfortunately, the new policy will help only a small number of carers, and the urgent passing of the new Act has ignited burning indignation among others, who resent being asked for their views about payment when all along (they suspect) Government had no intention of listening.
Now, we face a long campaign for a fairer approach to recognising the work of carers, whose important role in family life and society is still not systemically supported or valued, a message that hit home with the passing of the urgent legislation.
While some carers are calling for us to organise marches on Parliament, or say they will stop caring in protest, or talk of leaving those they support in the halls of Parliament to see how the state will cope with the demands of intensive caregiving (if only for a few hours), this community of potential activists has some unique barriers.
Carers are often too poor to travel to Wellington from the cul de sacs of our two islands. They have little energy left after their caregiving duties to wave placards at Parliament. They care about those they support too much to compromise their fragile wellbeing to make a point to politicians by leaving them in the drafty halls of the Beehive, even if they were willing to do this to help the caring cause.
Still, as the country’s biggest health workforce, and a large block of consumers, the wishes of this considerable community of New Zealanders will not be so easily ignored. Census 2006 found 420,000 carers
in New Zealand. We believe the true number to be more than one million, a majority of these providing basic assistance for friends and family members, and a portion having intensive long-term responsibilities.
As in the United Kingdom, Australia, Ireland, and other countries, the voice of carers is strengthening, and the use of tools such as Facebook allows them to congregate in crowds online as effectively as they might in Wellington, without the cost or inconvenience of travel.
New Zealand’s fledgling payment policy is a welcome start to recognising carers’ valuable work to support New Zealand’s most vulnerable citizens. We recognise Minister Ryall’s decision to not continue the court appeals and to move forward, albeit not as comprehensively as we would wish. For this issue at least, it is “the end of the beginning”, and the start of what we hope will be a better era of recognition and support for family caregivers.
We hope, too, that details of the soon-to-be-implemented policy will be fair to carers, without too many barriers that could further dishearten those who provide intensive care to some of New Zealand’s most vulnerable disabled people. Carers are, after all, a necessary investment … even if
New Zealand has yet to recognise and nurture them to the degree it prudently should.
We are conscious too that the urgent legislation is a symptom of a bigger issue: how our small country with its limited taxpayer population can afford world class supports and services for the growing number of Kiwis who need significant help to live good lives in their communities.
One solution might be a broad social insurance scheme, an investment we all contribute to, and are beneficiaries of if we, or someone we care about, has significant ongoing support needs.
It’s a solution worth exploring, since we can all expect to give or need family support during our lives.