Lily Dailey loves school but is struggling to learn because she isn't getting the support she needs, her mum says.
The five-year-old was born with a rare genetic disorder which affected her vision, caused weak muscle tone and development delays.
It meant she needed help with basic things like opening her lunch box, eating, going to the toilet, writing and staying focused on a task.
Mum Jani Alexander said they had sought funding from the Ministry of Education in 2017, but it was rejected because they didn't meet the criteria.
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The funding – Ongoing Resourcing Scheme (ORS) – provided support for the 1 per cent of school children who have the highest learning support needs.
"ORS is the holy grail for parents with special needs children," Alexander said.
"For Lily, everything is harder for her. We realised she can learn in a school but not without assistance."
Lily's application was one of 500 ORS funding applications rejected by the ministry in 2017.
In that same year, the ministry paid out $208 million of ORS funding for 929 applicants.
The ministry received 1606 applications in 2016, with only 1037 applicants receiving $184.4m in funding.
For children like Lily, ORS funding could mean a teacher's aide, occupational and speech therapists and special gadgets to help with learning.
Lily's family was attempting to re-apply for ORS funding, this time through Woodlands Park School in West Auckland.
Her mum had even set up a Givealittle page to raise funds for the school.
"Her teachers are doing their best but it's not enough for what Lily needs.
"We are grateful for what we have already but if we could get someone with Lily all the time in class, that would be even greater."
Funding for children with extra learning needs was one of the issues NZEI Te Riu discussed with its members in a meeting this month.
The primary and early childhood teacher union was calling for an urgent injection of funding for special education to ease the pressure on teachers, schools, parents and kids.
Arohanui Special School principal James Le Marquand said many students missed out on funding because they didn't fit the criteria, especially those in mainstream schools.
"The Ministry of Education's learning support surely has a high level of accountability for ensuring appropriate support and intervention is provided for our most vulnerable learners," Le Marquand said.
"However, very little has changed in the last 25 years except for the growing numbers in need."
Ministry of Education deputy sector enablement and support Katrina Casey said a three year work programme for education included developing an action plan for the learning support system.
It would ensure resources were allocated based on an individual child's needs assessment, she said.
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