Raising a family is a challenging task. Caring in a family setting for a disabled child — or an adult with a profound disability — is even more taxing, as hundreds of New Zealand families can attest. As if that task is not hard enough, many of these families have been forced to fight relentlessly for decent support against the restrictive provisions of the Public Health and Disability Act.
Funded Family Care aspects of the legislation excludes spouses and parents with younger children from financial support and limits family carers to the minimum wage. Even then accessing what support is available is onerous and complex.
As our reports today illustrate, these New Zealanders deserve a better deal. They have been doing what often falls to the state to do — care for those members of the community who are incapable of caring for themselves. When the families have tried to get a fair deal, they have been forced to fight lawyers acting for the Ministry of Health.
Obstacles have been erected against the families at many turns. Families engaged in a 12 year fight to get paid to care for disabled members. The Health Ministry appealed and lost a Human Rights Review Tribunal finding in the High Court and Court of Appeal.
The last Government's response to this defeat was restricted and tight-fisted. It legislated that family carers could only be paid the minimum wage for up to 40 hours a week and it framed the new law in a way that prevented legal challenges.
The families have their own reasons for taking on the onerous task of caring for a disabled loved one. A reason frequently cited is their deeply-held reservation against residential care where state subsidies do apply.
The community who care for their loved ones have battled with patience and dignity.
Rosemary McDonald, who looks after her 67 year old partner, a tetraplegic, expressed her feelings bluntly. "You get the feeling," she told our reporter, "that they actually actively hate disabled people."
Another woman, who cares for her severely disabled daughter, described her role as a mother as providing intense neurological nursing for her 17-year-old. "I have no future to look forward to," she said. "I have no worth in this country."
Bureaucrats who administer the system would reject these assertions, but it is not hard to understand the frustration behind this palpable anger. A principle of public policy is that it ought to be clear and fair. The Appeal Court called the Funded Family Care policy "impenetrable" , while the ministry, in its own evaluation, accepted the process of accessing financial support was "extensive", "complex" and "daunting".
Successive administrations have stuck fast to the view that paying families to care for disabled members would expose the government's books to an unacceptable financial risk. Yet just 354 families access funded family care, a long way short of the 1600 families projected when the law was passed.
So far, the new Government's response has been cautious and limited.
Labour undertook before the election that it would repeal the existing legislation and ensure all family caregivers be paid for assessed care for their disabled adult family member. It is time to honour the commitment.