Disabled kids lose benefit

More than 11,000 disabled children have lost access to a welfare benefit that is supposed to support them, as officials try to rein in previously-ballooning costs.

A Child Poverty Action Group report on disabled children, being launched in Auckland today, says children supported by the child disability allowance almost trebled from 17,600 in 1998 to 45,800 in 2009, but were then cut back to just 34,500 last June.

The cut has been achieved both by tightening criteria and by simply not publicising the allowance.

The allowance is unusual because it is not income-tested and pays a child's principal caregiver a flat amount, currently $46.25 a week, to recognise the "extra care and attention" that a disabled child needs.

CCS Disability Action policy manager Sam Murray said the numbers on the allowance increased in the decade to 2009 because of growing recognition of conditions such as autism and dyslexia. The cost leapt from $28 million in 1997-98 to $102 million in 2009-10, and has been cut to $84 million this year.

"So in 2007 they decided to review it," he said. "They only consulted the medical professionals and they made several changes. The re-did the medical certificate, they introduced new guides for both doctors and case managers, and they required consultation with new regional health advisers. They said the level of care required is high."

The new guide for doctors says, for example, that a 7-year-old with dyslexia can get the allowance if she is "unable to toilet, dress herself, play safely without supervision and doesn't recognise obstacles or dangers". But a 9-year-old dyslexic child who can take care of himself and avoid dangerous situations would not qualify.

Wellington advocate Graham Howell said one family with an intellectually disabled son lost the allowance when the boy grew old enough to tie his own shoelaces. A child with eczema lost the allowance when he became able to apply his own ointment.

"It's a very, very narrow definition of 'extra care and attention,"' he said.

Thames parent Jacqueline McGrath, whose son Cullen-lee was born with cerebral palsy and epilepsy, said she and her husband were shocked when another parent mentioned the child disability allowance when Cullen-lee was in intensive care in hospital, aged 3.

"We were just like, 'Disability what?"' she said.

Auckland social worker Nicola Chapman said that despite her professional background she didn't hear about the allowance until two and a half years after her son Daniel was born with a severely disabling neuromuscular condition.

Onehunga mother Emma-Rose Cottrell only found out about it last year when her son Jack was 8. His autism has been apparent since he was 3 or 4, Mrs Cottrell looks after him fulltime and her husband works only part-time.

"He's not allowed to do fulltime, otherwise I'd die of stress," she said. "I have to do naps most days, I am just exhausted."

When she finally heard about the allowance, it was "an absolute godsend".

"I get about $90 a fortnight," she said. "That $90 is enough to stop us from starvation and poverty."

Social Development Ministry manager Carl Crafar said the numbers of new child disability allowances granted rose again in the past two years. Applications that were declined fell from 20 per cent in 2012 to 15 per cent last year.