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Not disabled enough

Despite having large numbers of special needs children, many New Zealand state schools can't get the funding they require to make a difference in the classroom.

Peter Munro is a good kid from a happy home. At 12, he's tall and good-looking, affectionate with his parents. He spends hours playing on the computer or jumping on the trampoline. He attends the local state school, Belmont Intermediate on Auckland's North Shore. At this time of the year, his parents, like everyone else's, fork out for donations, stationery, school trips and uniforms. Unlike everyone else's Peter's parents also receive an extra bill each term - for teacher aide help. This year, that bill is likely to be $2000-2500 a term, or up to $10,000 for the full year.

Peter is autistic. When he first went to school at five, he could hardly speak and was barely toilet-trained. He threw tantrums, kicked, screamed and bit. Specialists warned his parents that he would never lead an independent life. Thousands of hours of one-on-one help later, Peter's prognosis has improved considerably. With prodding, he talks to outsiders (though he doesn't meet your eye and his speech can be hard to understand), he can read and write, though with more like a seven than a 12-year-old script. Tantrums are rare.

But he still can't take notes fast enough to keep up in class, his attention span in a room of 30 children is less than one minute and a technical subject like science is way beyond his capabilities unaided. Like all autistic children, he finds socialising hard.

The Ministry of Education tells his parents - as it has done since the family moved to New Zealand from the UK in 1999 - that their son is not entitled to targeted funding for the 10 to 12 hours a week of teacher aide help that everyone else - his school, his teachers, government-employed educational psychologists - says that he needs. So each term his parents Gillian and James Munro write out a cheque to ensure that Peter's free public-sector education meets his needs.

"In the UK, Peter was assessed as having a certain level of need and those needs were always met, even if you had to fight," says James. "In New Zealand, no one will listen. It's just about budgets. You can be told by one division of the Ministry of Education that your child needs X amount of teacher aide time, only to be told by another division your child isn't eligible for targeted funding at that level."

Peter's parents are not alone. Rebecca (not her real name) is a chartered accountant living in a wealthy Wellington suburb. Her daughter Ella, now 10, was born with cerebral palsy. She has an IQ of 50 (100 is normal), problems with speech and walking. Ella received nearly four years' of funding and was doing well at school when, in late 2003, Rebecca got a letter from the Ministry of Education saying that her daughter no longer met any of the criteria. Funding was stopped. Ella, the ministry said, could access money from the school's Special Education Grant (SEG) grant, but the school didn't have enough money available.

Rebecca: "I went berserk. We sent a scathing letter witnessed by my lawyer at Buddle Findlay. We sent detailed reports from an independent educational psychologist, Ella's speech language therapist, physio and occupational therapist. I used every contact I had, and told the Ministry of Education I was going to the media. Within days they sent two verifiers to observe Ella and we got funding before Christmas. They verified her as having a high intellectual disability. This is the same service that before said she didn't meet a single criterion.

"I'm highly educated, highly motivated, with the contacts and a chequebook to back me up. They gave the funding because they wanted to shut me up. But what about all the people out there who can't do that?"

Education lobby group Quality Public Education Coalition (QPEC) has a database of 450 parents and teachers of special needs children worried enough about their children's education to do the draughty-school-hall-after-work-meeting routine. And at a meeting late last year between the Ministry of Education and 12 families in Auckland's Eden-Epsom area, four families - a third of the total - were topping up funding.

Christchurch-based special needs home schooling expert Deraulle Hope gets about nine calls a month from frustrated parents thinking about simply taking their special needs children out of school.

The UN's Universal Declaration of Human Rights states that "everyone has the right to education" and that education "shall be free, at least in the elementary and fundamental stages". New Zealand's Right to Education Framework says that everyone should have access to an education "responsive to the best interests and benefit of the learner, in their current and future contexts", and that "accessibility includes affordability". The UN also states that "disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow citizens of the same ages".

Admittedly, the Ministry of Education has made huge strides. When state education was introduced in 1877, children with any sort of disability were specifically excluded. It wasn't until 1987 that they had the right to an education at all, and it was only with the Education Act 1989 that parents could insist on having their children educated in mainstream schools. Special Education 2000 refined the system more. Funding has increased to $356 million in 2004-05. The Ministry of Education estimates that 3% of the school population will receive support for high needs this year, an additional 4-6% through moderate needs initiatives and about 5% of the early childhood -population through early intervention.

In some areas, the system - based on the principle of mainstreaming, where students are taught in normal classes in local schools - works reasonably well. "An inclusive setting at a mainstream school is, I believe, the best for most students when it is organised well, supported appropriately and monitored carefully," says Kathy Henwood, special needs and abilities co-ordinator at Auckland Girls' Grammar. "What doesn't work is students in mainstream classes which are way above their cognitive level who have no teacher aide support."

Special needs education funding starts with an acronym: ORRS or Ongoing Reviewable Resourcing Scheme. Children classified under ORRS as having "very high needs" will get $14,356 a year this year, and high needs children $8325. The number of children being funded at any one time varies according to the school population, but will rise to around 7500 by the end of this year, according to the ministry.

The problem? Under the pre-ORRS scheme, says Colleen Brown, a Manukau City councillor, chair of the Parent and Family Resource Centre and long-time special needs campaigner, the Ministry of Education estimated that 1.8% of all children had learning needs severe enough to require individual, targeted funding. But when ORRS was introduced in 1998, the government decided to reduce targeted funding to 1% of all children.

At the time of introduction, 14,000 applications came in, almost entirely from children who had targeted funding under the previous scheme. "But," says John Minto, chair of QPEC, which late last year released a study on special needs education, "the ministry came back with money for only half these kids."

Margaret Parkin, Ministry of Education manager for eligibility for group special education, insists that two-thirds of those who originally applied for ORRS got it. And although only 1% of students are covered by ORRS, she says, a further 1% get targeted funding under the severe behaviour initiative and another third get help with communication via speech and language therapy.

Still, feelings are running very high. In the middle of last year, more than 700 parents and principals attended a series of Ministry of Education-organised meetings in response to a High Court challenge to the 1998 government decision to close special schools. The meetings were designed to get feedback on ways to improve special needs education, and the outcomes of these meetings, are expected soon from David Benson-Pope, Associate Minister of Education.

Of course, whinging about state school funding is a middle-class obsession. Aren't the problems with special education just part of this?

QPEC's survey last year canvassed 344 schools and teachers in more than 30 regions of New Zealand. "Closing the Gaps in Special Education Resourcing" is a scary document if you are the parent of a special needs child. Ninety-four percent of schools felt inadequately funded for special needs students, 80% said they didn't get enough ORRS funding, and 97% felt that the bulk-funded, moderate needs-focused SEG didn't cover their special education needs. Forty-six percent of schools said that their SEG money should be raised by 100%; 18% that they needed 200% more; and 25% that more than 200% increases were needed.

How much extra money is needed? "Fifty million would be a good start," says Minto.

Kathy Henwood at Auckland Girls' Grammar, a decile four school, estimates that her school has between 25 and 30 students with special needs ("depending on the definition used, this number could be considerably higher"), yet only six get ORRS funding. Another 10 would hugely benefit from ORRS, Henwood says, but have had applications turned down. "There would be at least another 10 to 15 to whom teacher aide support would be advantageous."

Is it more difficult to get ORRS funding than it used to be? "Absolutely, particularly at secondary level," Henwood says. "Filling in the forms takes much longer and the result is usually negative. It is almost impossible to get students ORRS funding who haven't had it previously. One of our students has lost all her funding."

At Mt Roskill Grammar's MacLean Centre, a unit catering for 45 students with physical and other disabilities, the story is the same. Lorraine Vickery, the manager of the unit, can think of six children in the main school with varying degrees of autism, none of whom have ORRS funding. One 14-year-old with a reading comprehension age of seven last year lost her funding because her epilepsy was under control. "They were taking into account her therapy-based needs, not her academic needs," says Vickery. "There is no doubt that in a mainstream classroom she would fail. The ministry is saying a student who reads like a seven-year-old could cope doing English, maths and science in a class of 14-year-olds, with no teacher aide help. She could not."

Vickery also believes that it is increasingly hard to get ORRS funding. "It seems if they make progress they are seen as no longer meeting the criteria, so they don't get funding. Their needs have not changed."

The story of funding being handed out and then taken away is repeated many times. The government's argument, says one school principal, is about as logical as giving a blind person a guide dog for a couple of years, then saying: "Hey, fantastic, he's able to get around on his own now, let's take the dog away."

"ORRS funding is an ass," rages Leiv Bjerga, part of a trust raising money for early stage intervention programmes for autistic spectrum children. "They only look at whether the child is capable of attending school, not whether they will learn anything." A child who is a health or safety hazard at school is far more likely to get funding than if they sit quietly at the back of the class learning nothing, Bjerga says. He knows parents in no great hurry to get their autistic children fully toilet-trained because that means losing ORRS funding that they need to make progress academically.

The Ministry of Education's Margaret Parkin says that ORRS simply provides funding to enable children to access the curriculum.

Ironically, the Ministry of Education underspent its ORRS budget by $900,000 last year. Because no more students met the ORRS criteria, the excess money went into a new scheme, Supplementary Learning Support (SLS), which doesn't provide teacher aide time.

On a financial level, it's crazy not to spend money upfront, says Margie Hatrick-Smith, occupational therapist in the special unit at Auckland's decile five Selwyn College. "What you want is tax-paying citizens. If you have someone with some learning disability and they get some input at the right time, you get fewer behavioural problems and you end up with a tax-paying citizen. If not, often the student gets kicked out of school and you could end up with someone in prison or in an institution. A little bit of input can make such a huge difference."

Teacher aide time is cheap - a teacher aide earns between $13 and $15 an hour - so providing one-on-one help for a child for a full day (rare in practice) would cost approximately $16,000. Over 15 years at school, that's a maximum of $250,000 to produce an adult who should be able to pay tax. By contrast, keeping someone on the benefit for life might cost $400,000, and that person doesn't contribute tax. A lifelong criminal can cost up to $3 million.

Ironically, one autistic boy was turned down for ORRS, but given a place in an expensive, taxpayer-funded special residential school.

There are a few options for students without ORRS funding, including SLS ($2.7m this year), Resource Teachers of Learning and Behaviour, (RTLB, $57.2m) and the Enhanced Programme Fund (EPF, $7.5m). But the main one that affects moderate special needs students is the Special Education Grant. Under SEG ($31.3m this year), the government bulk-funds every school in the country, based on its roll and decile rating. The school chooses how its SEG money is used - but it is often to boost teacher aide or therapy hours or to employ specialist teachers.

The SEG rationale goes like this. There are many more children with moderate needs in low-decile areas (possibly as high as seven times more), but often a disproportionate amount of funding is captured by more articulate schools and parents - normally in middle-class, high-decile areas. Bulk funding by decile solves this.

Fantastic. So when Peter Munro was turned down for ORRS, his parents assumed that they would get help through SEG. Not so fast. "Peter, at that time, was in a decile 10 primary school. The whole school got enough SEG to fund 10.5 hours of teacher aide a week," says James Munro. "We had a report from a registered psychologist to say Peter alone needed 12.5 hours at that stage, and there were other kids needing SEG money. The maximum the school could give us was two hours' teacher aide a week. We complained to the ministry, we made three ORRS applications, we wrote dozens of letters." Nothing worked, so Munro, who heads a New Zealand bank, wrote out a cheque.

"The school never put us over a barrel. They did not ask for money. But we believed the system wouldn't look after our son. So we had to."

There's another problem with SEG. Imagine two decile seven secondary schools with rolls of 1000. School X has a principal strongly committed to taking special needs children. School Y doesn't. "It's not that we don't want your child," says principal Y soothingly. "It's just that school X has considerable expertise and your child will feel more at home."

So school X ends up with 20 children with moderate special needs and school Y has just one. Their SEG grant is identical.

"SEG is distributed to all schools because it is expected that all schools will provide for students with special education needs," says Ministry of Education senior adviser Yvonne Hope. "Those schools with disproportionate numbers of moderate needs students can apply to the EPF."

True, but the Ministry of Education's figures show that they probably won't get it. Under the first allocation of EPF funding in 2002, 491 schools applied and 69 schools - or 14% of the total - got funding. Fewer than 10 of those schools were in deciles six to 10.

SEG is allocated this way because it costs less. "Any system of targeting resources to individual students in every school in New Zealand would require considerable administration and assessment for eligibility," Hope says. "This gets more money to the point where it can be used for children's learning."

The SEG formula is also a great way to future-proof Treasury against a rise in the number of special needs students in the system. Medical advances mean that more premature babies survive, so the number of children with moderate special needs increases. Also, the number of children worldwide diagnosed as being on the autistic spectrum has increased worldwide from 1 in 1500 to 1 in 500, and these figures are likely to be mirrored in New Zealand.

By bulk-funding SEG on a formula based on the school roll rather than the number with special needs, the government is insuring itself (and the taxpayer) against any rise in the number of children with special needs.

Sometimes what grinds parents down is being made to feel so guilty about demanding support. "Why should you be penalised for having a child with special needs?" asks Prue Payne, whose six-year-old autistic son Angus is disruptive at school, runs away, head-bangs and throws equipment, but doesn't get ORRS funding. "That's hard enough and then you have to grovel, down on your bended knees to get any funding at all."

"It's a begging-bowl mentality," Colleen Brown says. "Trying to get a good education for your child is like going out there with a tin for Guide Dog Week."

James Munro isn't smug about the $10,000 or so that he will fork out for his son's state sector education this year. He feels all the guilt of a white-collar professional paying for his son's education, when so many others can't. But after six years, he's sticking to his guns. "We know the fact we are doing it makes it worse for everyone else, but we don't care any more. We'll do what it takes.But it's no thanks to the system."

NEEDS MUST

It's easy to be shocked when you hear cases like autistic Feilding teenager Casey Albury, strangled by her mother, Janine Albury-Thomson. Or claims from CCS aired on National Radio's Nine to Noon programme recently that dozens of special needs children were abandoned into respite care in Auckland last year because their families couldn't cope.

It's almost impossible to imagine what living with a severely disabled child must be like. But moderate special needs? Like moderate incomes or a moderate rise in world temperatures, surely dealing with a child with moderate special needs can't be too bad.

Michael Johnson (not his real name) is a tall, dark-haired, 11-year-old living in Hamilton with his parents and three siblings. He's a bright child on the autistic spectrum, with a comfortable home, parents who love him and a supportive school. Although his psychiatrist and psychologist describe him as having a "severe disability of language and communication", he can talk well (even if he can't process the information he receives), so the government classifies him as having only "moderate" needs. He gets no ORRS funding and little teacher aide support. Here are a few paragraphs from a diary kept by Michael's school.

Michael has not had a good day - something upset him in the playground and he has become angrier as the afternoon progressed. He had to be isolated this afternoon because he was very aggressive.

DEC 2: Michael was upset about being requested to join in co-operative/social skills activities. He assumed D was laughing at him. He kicked D and attacked the teacher aide who tried to intervene. When another teacher restrained him, Michael punched her and bit her hand.

DEC 14: Michael spent most of the last few days at school in the "padded room" because his behaviour was out of control. While in there, he urinated on the floor.

DEC 21: Michael has been having a really bad time at school and at home, has been miserable and talking about killing himself.

Got the picture? It's hard. And that's without wondering if he's actually learning anything.