When Jane* turned 5 her mother, Sarah*, set about enrolling her at the local school. But it wasn't long before Sarah realised that, even though three other children with moderate disabilities attended the school, her daughter wasn't wanted.
"They were not very welcoming, it has to be said. Their approach was to be rather covert," says Sarah who, after numerous unanswered phone calls and vague responses to questions, gave up trying.
Next stop was a nearby school with a special needs unit. Sarah, who has a background in teaching numeracy and literacy, sat in on a lesson and had a look at some of the children's individual education plans. She wasn't impressed with the quality of teaching, the lack of structure and the lack of assessment criteria for each child's goals.
To cut a long story short, Sarah did eventually find a school that would take Jane and cater to her global developmental delay and mild autism needs. But it meant an hour of driving every day and involved a "horrendous" funding application process.
Sarah's experience is not unusual. As reported in the Aucklander last week, Christel van Baalen was given a similar run-around trying to get education for her 7-year-old daughter, Renee, who has Down Syndrome. In this instance, Renee attended her local school but was quickly made unwelcome.
Van Baalen was called to a Board of Trustees meeting to discuss funding options and asked if she could spend time in the classroom each week, whether she could take her daughter out of class for some periods and whether she could financially contribute for a teacher's aide.
Another school was eventually found that would accept Renee, but it wasn't easy. Van Baalen was unofficially told several other schools she had proposed were not suitable and would not look after her daughter properly.
Add to this sort of evidence the experience of Children's Commissioner Dr Cindy Kiro, whose office has encountered similar stories through its child rights line and via staff involved in education advocacy training. "Parents do not always know their child's rights," says Kiro.
"I have been told of a few instances of schools informing parents that their child cannot attend school full-time, the parent must collect the child at lunchtime, the child must stay home whenever the teacher aide is not there and, sometimes, of stand-downs or suspensions of children with high or very high needs."
In the year to June, 9 per cent of the 116 education complaints received by the commission involved special needs issues such as lack of access and inadequate support.
It is against this background that intellectual disability services provider IHC lodged a complaint with the Human Rights Commission in July, against Government policies and practices that prevent disabled students participating fully at their local school.
IHC's claim, supported by several disability advocacy groups, was that the Government's special education policy and practice breaches the New Zealand Bill of Rights Act by discriminating against students with disabilities.
The Ministry of Education was not amused. In April, prior to the complaint being lodged, deputy secretary of Group Special Education, Nicholas Pole, wrote to IHC, concerned that the organisation's actions would polarise the education sector, undermine its credibility to provide services to students and families and negatively affect working relationships.
Pole also tried to cast doubt on the likely success of IHC's claim, pointing out that school boards are independent Crown entities and that the Government has no control over their operational management.
As such, Pole said, IHC would have to show the Government had committed a "specific discriminatory act or omission" or that there was specific legislation, policy or practice which amounted to "unlawful discrimination".
Pole maintained that the ministry's focus was to ensure there were no barriers to enrolment and participation in education "for children and young people with additional support needs". To that end he promised to look into every situation where it is alleged a child with a disability has been discriminated against.
Pole was unavailable to discuss these issues. We asked how many complaints the ministry had received involving, or on behalf of, disabled children being denied access to school education since 1989. That was the year the Education Act changed, giving the right to free primary and secondary education for all students.
The ministry said it had a contract with the Children's Commissioner to provide an education inquiries and complaints service. It provided some statistics for the past five years showing a small number of special needs-related complaints each year.
We also asked the Human Rights Commission how many complaints it had received relating to children being denied access to education. The commission says it didn't have the statistical breakdown we sought.
But of the 221 matters under the grounds of "disability" and in the area of "educational establishments" that have progressed to the commission's Disputes Resolution Team since 2000, 33 were related to children.
IHC advocate Tony McGurk describes the ministry's position that schools operate as independent autonomous units as a flimsy argument. "They are forgetting that Government is responsible for resourcing the Crown entities [schools]."
He says the key point is that resources provided are inadequate to allow disabled students the same learning opportunities as their peers.
And that situations routinely faced by disabled pupils don't happen to non-disabled pupils: situations including limited attendance due to a lack of teacher aide funding; exclusion from classroom activities, sport, music and school trips because of a lack of support necessary to allow participation; suspension and/or expulsion for behaviour attributable to impairment; parents being required to contribute financially towards the support necessary to allow full participation in the curriculum; and the refusal to accept enrolment because of the student's disability.
McGurk says IHC will present evidence from parents and teachers to support its claims. It also has 45 school principals prepared to give evidence of the difficulties they face trying to give disabled students a fair opportunity to learn.
The principal of Onslow College in Wellington, Dr Stuart Martin, is not involved with IHC's claim, but is well aware of the issues. "What IHC is talking about is a true problem in the resourcing of a public good - there is not enough money to meet everybody's needs."
He's talking about students with a range of different disabilities requiring more focused teaching practice. A common response among schools is to put all students with special needs together in a group and apply the funding to the group.
Applied to a special unit within the school, the aggregated funding provides an economy of scale to deliver at least some of the education those pupils need. But it's not how it's done at Onslow College, where the policy is one of inclusion, also known as mainstreaming.
"All the education and social research tells us its the best way to do things," says Martin.
Ian Armstrong of the Inclusive Education Action Group says the research for inclusion over segregation in special units or schools is overwhelming. "It leads to much better social outcomes - friendships and ability to socialise - and much better educational attainment."
There are benefits for non-disabled pupils too. Martin gives the example of a student with Down Syndrome at Onslow College who, when he got to 7th form, faced the prospect of doing sixth form drama again.
"The 7th form drama class said, 'No he's our mate, he's in our class, he does the course with us'. The school had been great for him, but also fantastic for his cohort, who see those with Down Syndrome as part of the community."
The problem, says Martin, is the resourcing for special needs is not designed for inclusion to be successful. He points to the actual costs of providing teacher aides, a critical component of special education.
The Ministry of Education rate for funding teacher aides is between $14.43 and $14.47 net per hour. Compare that to ACC which pays for teacher aides at $16.60 per hour.
The actual average cost of teacher aides at Onslow College last year was $17.80 per hour - a shortfall of $3.40. The shortfall quickly adds up over a term - in Onslow College's case amounting to a difference of $10,000 between funding received and what it spent on teacher aide time for its high needs students.
How does the school cope?
"With goodwill, relying on parents and volunteers, cutting corners financially in other places, investing the money we do get, running some years at a budget deficit. We're living on the edge of our means the whole time." Other schools adopt a more direct approach, asking parents to contribute to teacher aide costs - in some instances of up to a $100 per week .
Onslow College is what's known as a "magnet" school because it has consistently cultivated a caring and supportive environment for those with special needs. Not surprisingly, it attracts more such students than other schools. Magnet schools also result from other schools persistently discouraging special needs students from enrolling, leading to very few or no special needs students on their roll.
The reality on the ground - an uneven distribution of special needs students at magnet schools - is ignored by the formula-driven nature of the ministry's special education grant. The annual bulk-funding is given to each school based on calculations derived from the school's decile ranking and roll numbers. The use of the grant is left entirely to each school's discretion.
The ministry says "enhanced programme funding" is available to schools with disproportionate numbers of students with moderate disability needs. But getting such money is not easy, as Prue Kelly, principal of Wellington High School, another magnet school, can attest.
Six years ago the school secured $72,000 a year for three years for four teacher aides to assist a large percentage of junior class students on its special needs register. In the previous funding round the assistance was cut to $42,000. This year it faces the prospect of getting just $20,000.
For the current financial year the ministry has $455 million for special education - over two-thirds of which is formula-based funding to support students with moderate special education needs. The remainder is provided to individual students with high needs, largely under the Ongoing and Reviewable Resourcing Scheme (ORRS).
IHC's beef with ORRS is that only 1 per cent of students are eligible for it, leaving an awful lot who don't receive anywhere near the funding needed to ensure full participation in school life. There are concerns too that the verifiers of ORRS funding don't actually meet applicants and that narrow eligibility criteria are excluding deserving students.
But probably the most difficult aspect of ORRS funding is the lack of information about how to get it. Children's Commissioner Dr Cindy Kiro reports that parents of children with disabilities have to "navigate a complex world of entitlements" - often without the necessary support, skills and personal resources to gain access to them.
"This causes severe stress for parents who find their children in situations where they feel their rights are not being met and they don't know how to deal with it or where to turn for information and advice."
Sarah, the mother at the beginning of this story, was successful in getting ongoing funding for her daughter, and while some of her education involves inclusion in the mainstream school classes, the bulk occurs separately in the school's special needs unit.
She points out the separation and specialist attention is beneficial for her daughter's learning by providing an environment with reduced stimulation to allow her to concentrate on developmental tasks.
A similar point is made by Carlson School for Cerebral Palsy principal Faye Philp, who redefines inclusion as "the right to a peer group and being part of your community" - something she believes can be achieved by ORRS students at special schools through plenty of community interaction.
While full inclusion of students with disabilities in mainstream education remains the goal of IHC, disability advocates and, to some extent, the Ministry of Education, it's also clear there remains a considerable gap between the ideal and the reality.
The IHC's complaint, which will play out later this year, is likely to involve mediation. If that process is unsuccessful in finding a solution, it could then proceed to the more legalistic Human Rights Review Tribunal.
*Names changed to protect privacy.By Chris Barton Email Chris