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Reviewing Funded Family Care and repealing the outrage of part 4A of the Public Health and Disability Amendment Act

by Hilary Stace

On Sunday July 7, Prime Minister Jacinda Ardern and Associate Health Minister Julie Anne Genter announced their intention to review the Ministry of Health’s Funded Family Care policy and repeal Part 4Aof the 2000 NZ Public Health and Disability Act. 

These are festering injustices from the last government that have angered many in the disability community since 2013. But the lack of detail of exactly how this will happen – as such policies often have tentacles of discriminatory and person-diminishing implementation – saw cynicism overcome joy in subsequent reporting. 

Some historical context might help. Traditionally, caring work has been considered ‘natural’ support, the stuff that (mainly) women do without expecting payment. But early this century some carers of disabled family members took legal challenges against this assumption. Non-related carers could already be paid, and even relations who lived at another address could claim payment in some circumstances. But family members at the same address, those likely to know the disabled person best, were excluded. The courts heard some opposition from some disability advocates who suggested paying family carers risked exploitation and abuse, but mostly the cases focused on parents who wanted to be paid to care for their disabled family member, just as non-family service providers would. 

In 2008 the Human Rights Review Tribunal agreed and the case (known as Health v Atkinson) proceeded to the High Court. The families won but the government, through the Ministry of Health, appealed. Eventually the families won in the highest court, the Court of the Appeal. 

Under the Minister of Health at the time, Tony Ryall, a grudging response severely limiting payments was developed. A new policy was enabled by an amendment to Part 4A of the 2000 Public Health and Disability Act which snuck through under urgency in the hours following the 2013 Budget. The Government did not have a majority but they held the proxy votes of the Māori Party who were apparently not in the House at the time. Not only did this legislation confirm that disability care was an unpaid family responsibility, this legislation banned any appeals about the policy under the Bill of Rights Act or to the Human Rights Commission.

As the details were revealed many in the disability sector were incensed, as well as some astute MPs such as the Green’s Catherine Delahunty. Few others noticed. But Otago legal expert Andrew Geddis did. He wrote about this legal outrage on the Pundit website – and in doing so managed that rare feat of a flipping a disability issue into the mainstream.

The vindictive intention soon became obvious. Under the new Funded Family Care policy the carers of severely disabled adults (aged from 18-65 only), but not spouses, could apply to be assessed, through demeaning processes, for a maximum of 40 hours per week for the minimum wage. To make it extra complex, the disabled person had to take on the responsibilities of employment for their family carer. Unsurprisingly, only a few families ever bothered negotiating the eligibility criteria.

Rosemary McDonald, who had been part of the court case and wanted funding to care for her disabled spouse, laid out the considerable complexities of the legal cases and expressed her contempt for the ongoing injustice about Funded Family Care here and here on Access. She featured with other families promised justice in September 2018. A Ministry of Health commissioned report in December that year by Sapere revealed the many flaws of the policy.

Resentment about this policy continued over the years even as a related case was won. Repeal was part of the 2017 election manifestos of the Labour and Green Parties. But 20 months on, this attack on disability rights seemed to have dropped off the agenda. Until now. 

With this history, it is not surprising that trust is low and the response less than jubilant and grateful. Relationship building requires more than press releases. This Government looks kinder and more compassionate than the last one, but how does that get operationalised through policy settings and onto the front line?

It would have been helpful if that Sunday’s press release also had some answers for our many questions. Will the same compassion be applied to the assessment processes, which for some take a very narrow view of eligibility? It's great that the hourly rate is going up, but will there be an extension to the current maximum of 40 hours considering that caring responsibilities can be 24/7? How will ‘disability’ be defined? Will you be able to claim if you also get services? Or Individualised Funding? What if the disabled person or carer is over 65? What will the effect be on any other benefits? What about respite? 

Sadly, abuse of disabled people by family members is not rare, so how will it be monitored? Setting up a monitoring group led by disabled people themselves would be a good start.

Hopefully the select committee will provide an opportunity for submissions about what real improvement could look like. Along with the Ministry of Social Development’s current consultation on the Carers' Strategyand in the new context of ‘wellbeing’ we could do something really innovative about respecting modern caring as well as disability rights. It could also rebuild trust.

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