Editorial: Give parents some support

OPINION: Only parents who have gone through the experience of raising a handicapped child to adult age, then continue to provide extensive care for him or her for decades after, can describe the emotional toll.

To the untrained eye it can be seen as an ultimate labour of love, a decision to surrender freedom in their senior years to be instead tied to the needs of another adult.

Yet some people in this position complain they are unable to make that sacrifice, because they cannot afford to do what a complete stranger will get paid for. The absence of Government financial support for these parents denies many of them the opportunity to continue providing full time care for their children. As a result, those children move into a new and unknown environment, where their caregiver will be paid to look out for their needs.

A group of nine parents have lobbied against the present rules, which have been adhered to by successive governments, and last week they celebrated a major victory, only to have it tempered by a Government announcement that it would probably appeal. The Human Rights Review Tribunal ruled parents who care for severely disabled adult children should be eligible to receive payment. Health Minister Tony Ryall was on the scene before the champagne corks were popped, declaring an appeal was likely. The minister maintains the decision has implications "far beyond the disability sector". Mr Ryall may well see complications ahead if the Government's hand is forced on the issue, but similarly he cannot argue two wrongs make a right. It is absurd that a family should have to expel a child from the home because the money needed to care for him or her will only be paid to a third party. The present system would appear to make no economic sense either, because it cannot possibly cost the taxpayer less to place a severely disabled adult with a paid caregiver. Indeed, the tribunal found the financial impact of paying the family members was "not likely" to be great within the disability sector, and the policy "acted against the objectives of the Government's disability strategy".

The discrimination against parents is also reflected in the policy that denies grandparents who become primary caregivers for their children's children access to the same Government assistance which is made available should the same children be placed with foster parents. In both cases, the legislation is counter productive to keeping family units together.

That makes Mr Ryall's comments on Friday all the more disappointing. Chief human rights commissioner Rosslyn Noonan says any appeal would "constitute a further unconscionable delay in ensuring these long suffering families can finally receive justice". It is a point the Government should consider before electing to appeal. While it might win support for aiming to keep the purse strings drawn, it is likely to take some telling body blows as individuals come forward to tell their stories of unsupported sacrifice. They might not need the same pay rates as third-party caregivers, but they deserve some support.

- © Fairfax NZ News