Tracey Formosa-Archbold has not worked since her son started school.
Kaden Murray, 12, has severe oro-motor dyspraxia, meaning his speech is delayed. He has also been diagnosed with anxiety, attention deficit hyperactivity disorder, autism and an intellectual disability.
Kaden was granted Ongoing Resourcing Scheme (ORS) funding from the Ministry of Education when he was 4. It provides support for students with the greatest learning needs.
"You think, 'That's great, that will mean he's got all the support he should have at school', but he doesn't," Formosa-Archbold says.
It was "always a battle" getting teacher aide hours approved.
"When he started school, he had quite severe separation anxiety. So for the first two years when his teacher aide wasn't with him, I had to be with him."
Formosa-Archbold still has to be available for Kaden at his current school in Christchurch, in case he has a panic attack or behavioural problem when an aide is not by his side.
"I just haven't worked, I didn't work. There was no way ... And it's not just when his anxiety is high. He'll struggle, they'll call me. Being available to him at school has just been part of the way it is.
"The school doesn't have the resources to manage your child if they need that extra one-on-one. If they've got the aide there, that's great, but I don't know anybody that's got a full-time [one]."
THE PROBLEM WITH ORS FUNDING
ORS funding is categorised by two levels of needs: high and very high.
To meet approval criteria, students must have either ongoing severe difficulty in learning, hearing, vision, physical or language use/social communication, or moderate-high difficulty with learning, combined with high needs in two of the other four areas.
ORS funding allows the ministry to provide specialists, additional teachers, aides and support items to students, to help their needs.
About 1 per cent of students receive ORS funding.
Cathy Johnston, whose son Mitchell, 11, has ORS assistance, says she worries about her friends more than herself.
"A number of my friends have got special needs kids, and they're not quite as severe as Mitchell, but for whatever reason it's been incredibly frustrating for them to get [aides].
"I can't say the same for other families, unfortunately, but for me it's been extremely positive ... I just wish some of them would get the kind of help that I receive."
Erika Harvey, whose daughter Piper, 7, has ORS funding, says the "extremely narrow" criteria mean parents end up battling each other over the limited pool of money.
Children who need help, but are not "the most severe", end up falling through the cracks and never improving unless parents seek outside assistance, she says.
"Look at half of the people who have done amazing things for the world – they've been autistic. Why the heck are we not supporting these children?"
While technically illegal under the Education Act, schools also use "creative ways" to pass off potential students they know will not have or get ORS funding, Harvey says.
Piper's school, Greerton Village School, is on the opposite side of the problem, as one of the "magnet" facilities being "punished" for taking in more children than it can financially handle.
It is operating on a $118,000 deficit, Harvey says, due to the demand for aide support requiring additional hours having to be funded on top of what has been granted by the ministry.
"The funding model is so skewed. It actually promotes exclusion ... The issue is from years and years of neglect and underfunding. It's snowballed into this crisis."
Harvey does not understand how New Zealand reached this point.
"I just had a call yesterday from a parent who has three children who are autistic. She just tried to kill herself because she can't handle it and she feels like a failure.
"It breaks my heart, I'm just getting emails from parents who are suicidal and their mental health is going, they're losing their house because they have to work. They have to choose between a job and giving their child an education - these are choices that people shouldn't be making."
A HISTORY OF NEGLECT
University of Auckland professor Missy Morton, whose research specialises in disability studies in education, says New Zealand has a history of neglecting its disabled community.
When she first entered the field, Morton worked in psychiatric facilities, including Dunedin's Cherry Farm Hospital and Auckland's Māngere Hospital, where people with disabilities lived alongside patients relocated from lunatic asylums.
"There were kids there that didn't go anywhere. They lay on the floor of the ward, they didn't have their own clothes, they didn't have physiotherapy or occupational therapy, they were institutionalised in every sense of the word."
People in those institutions "experienced a lot of abuse", she says.
Most of those facilities closed only about 30 years ago, around the time of the 1989 Education Act, which said all children could go to school.
"There's still people who are in our system as educators who don't believe these kids belong at school. If you don't see somebody as a student, it's hard to believe that you can actually teach them.
"Sometimes no amount of evidence is going to change stereotypes. But for most people, continued exposure and interaction, I think a lot of people are fearful of some kind of difference, and when you actually get to know somebody as a fellow human being, they're much less fearful."
A big part of the de-institutionalisation movement was making sure people were integrated with the community, however many schools still had a special needs unit physically separated from mainstream blocks, which created an "out of sight, out of mind" mentality, she said.
"Some schools have overcome that, they've re-purposed some of those rooms and made sure that kids without disabilities spend a lot of time in those rooms, but you have to work really hard."
NO-ONE HEARS THE COMPLAINING'
New Zealand Down Syndrome Association president Shelley Waters says there is "inadequate" teacher training in the learning support area.
The Government needs to "take more responsibility" for funding specific learning support training for teachers, at an undergraduate level and with postgraduate professional development, she said.
Morton says current opportunities for such development, and teacher education, is "quite variable depending on where you train and when you trained".
A former Wellington special needs unit teacher of 10 years, who does not want to be named, says she left her job because she didn't agree with what untrained aides got away with.
She made complaints about mistreatment of students from aides. However, those employees, who often did not have formal job descriptions and were hired without qualifications, continued to do "what they felt like doing".
"If you saw what was happening ... your toes would curl. The most appalling thing is these students can't talk for themselves so they actually don't have a voice. So no-one hears the complaining. Anyone can do anything they like to, and with these students and there's no consequences."
Teachers come into the industry with high hopes, but leave exhausted and frustrated, she says.
"You do it for years and years and years, and the thing is it's like pushing sh.. uphill. If your management is not listening to you, and the aides are doing what they want to do, and you're trying to do the best you can for the students, you're getting nowhere.
"In the end, you give up."
COMPLETE OVERHAUL NEEDED?
Disability Rights Commissioner Paula Tesoriero says it is vital that discussions about the future of the education system focus on ensuring inclusive education is "not a nice-to-have, but every child's right".
Tesoriero referred to statistics from the 2017 June quarter Household Labour Force Survey, which reveal 42 per cent of disabled New Zealanders between the age of 15-24 are not in employment, education or training.
"This is an indication that our education system is not as inclusive as it needs to be," Tesoriero says.
"An inclusive education system where children are supported to receive, participate and achieve to their full potential can change this outcome for disabled people."
Ministry spokeswoman Katrina Casey acknowledges there are "some challenges" with the system.
Demand is increasing for learning support due to population growth and earlier identification of needs, she says. There are also more children with "complex, and in some cases enduring needs".
The ministry is implementing a new learning support delivery approach, Casey says.
The new approach includes having single support plans for each young person to achieve their learning goals, more flexibility to create responsive support, providing families with support to navigate the system, and better facilitating connections between local education and service providers.
But Disabled Persons Assembly national policy manager Esther Woodbury says issues cannot be resolved by having a learning support division alone.
"There needs to be a total cultural shift within the Ministry of Education for all students to be able to experience the lifelong benefits of belonging, participating and succeeding in an education system which actively values them."
An inclusive education system is possible, but there needs to be co-design from the disabled community, Woodbury says.
"The whole education system needs transforming and rebuilding. Decades of reviews and tinkering have not solved systemic and structural problems which negatively affect students, families and schools.
"The change we need to see today is a large-scale move away from the segregation of disabled people in special schools and special units. Disabled people are part of our society, our communities. It is time for our communities, and specifically our education system, to figure out what that actually means."
Associate Education Minister Tracey Martin says the system has been "chronically underfunded".
There were problems around the way support services are structured, and gaps in data collections "which mean we don't currently fully understand the extent of the need".
The Government invested $273 million in this year's Budget in learning support, and is developing a Disability and Learning Support Action Plan, she says.
"This action plan will ensure that resources are allocated based on an individual needs assessment for each child, and that all students receive the individual support they require to succeed."
Martin hopes to have a draft out to talk to stakeholders about "in the next few weeks".
IHC director of advocacy Trish Grant says the plan is based on consultation done by the previous Government.
"Unless you've got good prevalence data, unless we know how many kids in New Zealand require additional support to learn, and you base your resourcing framework on that data, then you're setting up kids to fail and schools to fail."
The Budget granting funding for an extra 1000 ORS-approved students is "propping up a flawed framework".
"Total reform ... will be years in the making. Meanwhile, these kids and schools are not getting what they need."
All new teachers should have the capacity to teach all new learners, Grant says.
There should also be better reporting from schools to ensure students' achievements are visible, and can be held accountable by the Education Review Office, she says.
"If they don't deal with these systemic problems, a new model is not going to do anything. A new model will further entrench the problems from the past that we know are deeply rooted in systems that don't work for diverse learners."
The issue concerns human rights, and the fact it has gone on for so long is a "disgrace", she says. "Let's not hide behind rhetoric, we need real action ... These kids have been waiting since 1989, even before that, for a fair deal.
"We don't need another system for these kids. These kids deserve a better response from the whole system."
Erika & Dan Harvey
A blog about our journey through the spectrum with our daughter Piper. Enjoy and feel free to share with others.