Following the news that the number of child disability allowances being granted has almost halved, some parents have said they have to fight government agencies to get the funding and services their children are entitled to.
A report from the Child Poverty Action Group said parents were struggling because services are inconsistent, some schools discourage special needs students, and the number of Child Disability Allowances granted has almost halved.
Donna Hemi's 22-year-old son has Global Developmental Delay, Scoliosis and Epilepsy.
She said the family had gone through three emotionally draining arbitration processes to fit her son into narrow criteria in order to get the correct services.
"Oh it's been a battle - there's no doubt about that. We've been through three arbitrations. They are incredibly draining, emotionally: you are detailing the most negative aspects of your son to meet a criteria that is so narrow."
Ms Hemi said she had previously gone straight to the Minister, because she was so frustrated with bureaucratic red tape.
CPAG calls for investigation
The Child Poverty Action Group (CPAG) is calling for an investigation into why there has been such a sharp drop.
It said there was anecdotal evidence that parents of disabled children have to fight to get the allowances, and that schools, particularly low-decile ones, are failing to recognise and provide services for children with special needs.
In a just-released report, the group also called for a review of funding and the allocation of services.
CPAG co-convenor Alan Johnson said there needed to be an overall review of funding and services.
"Budgets are being cut - we know, for example, funding in special education is not keeping up with inflation, let alone with need.
"And so whilst the government will say we've spent $1.2 billion on something else, or somewhere else, the reality is these budgets are slowly being eroded both by inflation and small cuts, and no one's talking about it."
Campaigners said children with disabilities are more likely to live in poverty and to struggle to be included in society, and they are invisible in social policy development.
There are about 95,000 disabled children aged 14 and under in New Zealand, and a survey done two years ago showed 15 percent of them live in households with incomes of under $30,000.