New Zealand's inclusive education policy means that most special needs children are integrated locally, meaning any lack of resourcing has the potential to affect all students in a class with high-needs kids.
Some schools are still turning special needs children away, while others only allow children to attend if a teacher aide is present. This is illegal.
Parents have told the Herald of schools sending children home because they soiled themselves; autistic "runaway" children unable to enrol because there were no extra staff or no fences; or parents being called daily to retrieve kids who were "misbehaving" - often autistic children who lashed out in frustration because they weren't getting correct support.
"It's just criminal," said Sue Kenny, a Whanganui mum.
"Resources are limited and you have people jumping through hoops to get them, which ends up with schools and parents fighting each other."
Even those who qualified for top-level funding say they're not getting the support it ensures. Andrea Lee has a 10-year-old with a genetic condition called Fragile X syndrome, who struggles to sit still because of poor muscle tone. She said they waited two years to see an occupational therapist.
"And these are the kids identified as the top few per cent and even then they can't get service. How do they justify that?"
The situation has improved - a 2015 Ero report found 78 per cent of schools were "mostly inclusive" - however only half of those were effective in promoting achievement in special education.
New Zealand Disability Support Network head Garth Bennie said this was despite New Zealand comparing well internationally in special education spending.
Mr Bennie said the "complicated and fragmented" system saw staff and process costs exceeding service delivery.
"For example, you might have a bunch of specialists talking about whether a student needs an iPad - and once they have talked for an hour that's equal to the cost of the iPad."
Schools say they are doing their best with what's available, but New Zealand Principals' Federation president Denise Torrey admitted some were "unfortunately" still using exclusionary practices.
"Our position is that every school should look after their own local kids. But more resourcing and expertise is needed."
The ministry said it did not support parents paying teacher aides.
Last year it spent $20 million on physical modifications in schools, and would like to hear about incidences where fences were not provided if necessary.
It refused interview requests for this story.
Families 'alienated' in update
Education minister Hekia Parata has increased special education funding to $530 million. In the Budget she announced another $62 million, including extra teacher aide support.
Ongoing resourcing scheme funding was increased to cover 9000 children but forecasts show 9368 children are expected to qualify for the scheme by 2018.
The Ministry of Education has launched an "update" of the system focused on high-level changes. Officials have held meetings with more than 2200 people around the country as part of the update. However, of those, only 183 were parents, who feel they have been deliberately excluded.
"I only heard about it because I'm a teacher and managed to sneak in the back door," said mum Glenis Bearsley. "They're not including us, they're alienating us. But yet they say we need to work together."
Parents have begun a petition asking the update be put on hold until they are included. The ministry said it would have more forums if people wanted it to, and those interested should contact their local director of education.
Unions and advocates are worried about the speed of the update.
"The secret and rushed way it's being done makes it a 'brushing under the carpet' review," Labour's education spokesman, Chris Hipkins, said. "Why do it if no one knows?"
Ms Parata said no one had been denied an opportunity to contribute to the special education update.
Mum: I fight every day for my son
Mum Merryn Straker likens managing her son's special-needs schooling to running a small business.
Fortunately, Mrs Straker has experience in business - she has her own company - and considers her boy one of the "lucky ones" even though she has to fight every day for his rights.
"There are lots of families who don't have the skills or resources and their kids are definitely falling through the gaps," Mrs Straker said.
"I accept the Government can't fund everything but I think that the basics are missing. And if it's missing for me and I'm a stroppy one, what's going to happen for families who don't know they should demand more?"
Mrs Straker's son Oscar, 8, has Ataxic Cerebral Palsy, giving him fine motor, gross motor and severe speech issues. He has Ongoing Resourcing Scheme (ORS) funding, which gives him an entitlement to specialist support and 11 hours a week of teacher aide time. To ensure Oscar has help to open his lunch, Mrs Straker pays about $4000 a year for the aide to stay longer each day.
She also pays about $5000 a year for private speech therapy. Oscar is supposed to see a state-funded specialist but he has yet to see her this year. He is also entitled to a physiotherapist but in his first year at school the physiotherapist was on maternity leave and there was no reliever.
"I know Oscar has the intellect and ability to be a fully employed taxpaying member of society. But he's only going to get there if we put the resource into it."
What's the problem?
• The demand for special education is exceeding resources, with the numbers of children in at least three services higher than expected last year, and predicted to keep growing. Increased rates of neurodevelopmental disorders like autism and fetal alcohol syndrome, and babies surviving complicated births, is partially driving the growth.
• Approximately 80,000 children - or one in 10 - get some special education funding. Only 3 per cent, about 23,000, receive high-level support. About 1 per cent get extra intensive support from the Ongoing Resourcing Scheme.
• Not all children are getting the support parents and schools believe is required. A third of children who apply for ORS funding - about 500 each year - are turned away. Waiting lists across specialist services such as speech therapy are exceeding time limits. More than 1600 under-5s are currently waiting to see a specialist.
• Fewer special students are achieving NCEA and University Entrance, which the Education Review Office says may be linked to increasing demand.
• Over the last two years $32 million of special education funding went unspent, partly because schools struggle to employ qualified
staff.
Tomorrow: Should challenging cases go to an independent court?
