Families with disabled children are selling their homes, uprooting their lives and moving out of the Wairarapa so their children can get the education they say they can't access in the region.
The Ministry of Education says students with high needs are receiving a high quality education at mainstream schools in the area, but families are leaving because they believe their children will get a better education elsewhere.
One family making the move is the Barnes family, who is in the process of selling their home in Carterton to move to Lower Hutt for their five-year-old daughter Aerin's education.
Aerin has Prader Willi Syndrome, but is being investigated for other genetic syndromes.
She can't talk, chew or swallow, can't hold a pen and has seizures.
"There is only the choice of mainstreaming if we stay here,” her mother Emily Barnes said.
“She moves the whole time, she's quite disruptive in the fact she'll wander around children and touch them the whole time, she climbs on adults, she licks everything, so although she wouldn't be standing on a table screaming and shouting and causing a disruption that way, she would disrupt the class in many, many other ways, so she needs a lot of support, the entire time."
Ms Barnes this week began a daily 138 kilometre round trip to drive her daughter from Carterton to Kimi Ora School - a special school in Lower Hutt, while they wait for their home to sell. It's the closest special school to them.
"It is very, very specialised, I don't think that every teacher, this is no disrespect to teachers at all, I don't think that every teacher in a class with 30 children has the time to deliver such a specialist expert programme to one child without there being a knock-on effect to the other 29 children."
The family has appealed to the Ministry of Education for a specialist school or unit in the area, a plea they said was supported by 44 other local parents, but felt they had no choice but to leave after receiving a letter from the Ministry, on behalf of Education Minister Chris Hipkins.
“I understand that regional ministry staff have been in contact with the Wairarapa Primary Principals’ Cluster and that at this stage no school is wanting to establish a Special Needs Unit,” the letter stated.
“The Ministry of Education cannot impose the creation of a learning support space or hosting of a satellite class on a school, and there are currently no plans to build or provide a special school in the Wairarapa.”
Ms Barnes said it came across as nobody wanting to help her daughter, or other children in the area with special needs.
"It is upsetting that 25 schools in the area don't want to help our children with special needs, and we're not talking about all children with special needs, we're talking about the ones with more complex special needs that just don't thrive in a mainstream environment."
There are 49 primary and intermediate aged children in the area who receive ORS (ongoing resourcing scheme) funding.
Masterton Primary principal Sue Walters said no school in the area wanted to establish a special needs school or unit because children were accommodated within mainstream schools.
"I've seen kids that people believed were basically uneducable turn around and achieve stuff that your so-called-normal children can't do."
She said she couldn't speak for other schools in the area, but her staff had the talents and support to ensure children with special needs thrived.
But Associate Minister for Education, Tracy Martin, said parents were the ones that truly knew what was best for their children, and it was time the system started listening to them.
"I'm not trying to take away from the educational professionals at all, but these young people have physical needs, educational needs, social needs, so for the education system to just say to the parents about their children 'we know best, so we're not going to discuss it, we're not going to look at options', I think that's very disappointing, I think we'd like to move past that.
“We'd like to start working more closely with the parents and looking at why don't these parents have similar choices for their children as all other children have."
Ms Martin said the Wairarapa might not need its own special school, but a satellite unit could be beneficial. However, principals might be concerned it wouldn't be properly funded.
Ms Walters said her school and others needed more funding to meet all students’ needs. Her school often had to dip into operational funds to top up teacher aide hours, as most children who meet ORS criteria only received 10 to 17 hours a week.
"It would just be so good to be able to have these kids fully covered and fully catered for. If they need to be covered it doesn't stop at lunch time or at one o'clock when the money runs out. They have to be covered. And the problem is other kids can be seen to be missing out - you know, no I can't afford all the technology I'd like to at my school because I'm actually spending it on some of these sorts of things."
Disability Rights Commissioner Paula Tesoriero agreed with Ms Walters that work was needed to ensure all special needs children were able to access an inclusive education at their local school, rather than having to attend a special school or unit.
Many children at the moment were not receiving the education they needed.
"I agree that's the reality for too many disabled kids in New Zealand, and looking at the stats in terms of outcomes speaks to that. I think there are a range of reasons and things that need to change.
“I'll continue to advocate for this as part of the government's 30 year vision, that inclusive education for disabled kids is there and we really address this properly once and for all."
The Ministry said Marlborough, West Coast, Motueka/Golden Bay and Gisborne were other areas without a special school or satellite class.
It was continuing discussions with Wairarapa principals on what support was needed.