The vast majority of families who have children with a disability or chronic illness are missing out on financial help because the application process for the Child Disability Allowance is too complicated.
That's according to research by the Child Poverty Action Group, which spoke to 100 families in the Auckland suburb of Ōtara with children with a serious illness or disability.
The study (PDF, 893KB) found that 82 percent of those families didn't even know the allowance existed.
The group has previously estimated more than 11,000 children around the country could be missing out, due to tighter criteria and a lack of knowledge about how to access it.
Photo: 123rf
A GP in Ōtara's town centre, Mark Arbuckle, has had first-hand experience of the challenges families went through to get their entitlements.
There were a number of factors that made the process less than ideal, he said.
"Initially they go to Work and Income and pick up a form then come to us, we fill up the form, then they take it back to Work and Income.
"So there's a visit to Work and Income, a visit to us and then back to Work and Income."
The Child Disability Allowance is worth $46 a week for eligible families.
Lisa Martin, from the disability advisory service Disability Connect, agreed that the process to apply for the allowance was convoluted and put people off.
"Some of the challenges there are, well, first of all transport for the family to get to the GP. Wait times at the GP's, the cost of having a GP to sign off that certificate.
"Families will often wait until a child is very unwell and they have a need to go to the doctor anyway before they think, OK, well, I'll combine that with applying for the Child Disability Allowance."
A more straightforward way, according to Dr Arbuckle, would be an application process similar to that for the Supported Living Payment.
That form was completed at the doctor's surgery and sent straight to Work and Income, he said.
Another challenge to families getting the Child Disability Allowance was a lack of information given to GPs, as well as parents and caregivers about who was eligible.
"One of the issues is that we often don't think about children and if they have a disability allowance because they come in with skin and respiratory problems.
"And you treat that but you don't necessarily think 'do they need extra help to look after this child because of the severity of their illness'," he said.
Better information about who could access the allowance was one of the recommendations from the Child Poverty Action Group.
Spokesperson Alan Johnson said, when people were already struggling with other challenges, getting hold of the allowance should be more straightforward.
"Communities such as this one in Ōtara have a number (of) barriers to access, some of them language, some of them technology.
"Some of them to do with the fact that families are already under a great deal of stress and they don't have the additional effort and energy and resource to go and apply for something from Work and Income."
Ministry responds
A spokesperson for the Ministry of Social Development welcomed the group's research, and said it would respond once it had fully considered the findings.
In a statement, it said: "The ministry works closely with the disability community to ensure we continue to provide the right level and type of support to disabled people and their families.
"We provide a range of support for parents and caregivers who care for disabled children and young people. We understand how tough this can be for many people and we're here to help."
