Fraught and frustrated: parents battle for special needs children

Parents of children who need a hand up at school are becoming increasingly frustrated with the lack of help available – and in desperation some are turning to home schooling as an alternative.

They have told Newsroom their children’s special needs are either not being recognised, or if they are, schools are finding it difficult to access funds for teacher aides. Teachers are becoming increasingly aware of issues such as autism spectrum disorders, but their cries for help are, in turn, not being heard.

The issue is reaching a crescendo in the hidden pages of closed Facebook support groups, where the agony of parents is heartbreaking.

The same theme keeps emerging – to access any help for their children, they must become “THAT parent” – the annoying, nagging, complaining mum or dad who is constantly on the principal’s doorstep making demands. Or, they need to know someone who knows the system and can guide them through the maze of forms, procedures and hoops to get help.

The Ministry of Education funds a raft of special needs, and this area is currently being restructured to pour more money into early childhood - but the minister has said its budget won't be increasing, so that's likely to come at the expense of over-eight year olds. Demand for such services has been steadily increasing in the last several years as psychologists get better at diagnosing issues, particularly those on the autism spectrum, and schools become more aware of what they're dealing with.  But many are critical of the multi-layered bureaucracy involved to get help for a child, and not all schools are up to speed with the problems - or the solutions. 

“They tried to make it our problem,” a Christchurch mother 'Sarah' told Newsroom. “[The school's] first assumption was always that there was something wrong with Ethan's home life. We came up with a [learning] plan eventually but they didn’t follow it – not all the teachers knew about it. They sent me an email saying ‘We didn’t sign up for this’.”

She says she and her husband are both well educated and able to express their views to the school – “What about people who have English as a second language, or feel intimidated?”

“The education system needs to start listening to the parents,” says Kitt Slater, the mother of an ADHD son. Her experience at a North Shore primary school was of endless form-filling, and pitting professionals who knew Alex needed help, against teachers who didn’t want to know.

“At first the teachers said he was naughty. We paid quite a lot of money to get him professionally assessed but they wouldn’t use the assessment. The school said there was no funding for him because it was decile 10 school. He had a fantastic teacher for the first two years but she left. I just don’t think they had the knowledge to deal with it. You don’t want to always be at the school being a pain. It takes so much energy.”

The situation improved when Alex moved on to Northcote Intermediate, which she said was “wonderful”. But in the meantime her desperation to help her child had led to her becoming a teacher aide.

“I had to – because no one else was doing anything,” she said. “Lots of kids are falling through – there are so many. “They struggle, and parents don’t want to put their hands up.”

Helping families navigate the maze of the system are groups such as Auckland-based Disability Connect, which has a social worker available funded by the group. Chairman Colleen Brown says they are inundated with requests for help, so much so that they are fundraising for another social worker – a position she believes should be funded by the Ministry of Education.

Getting help for those children on the autism spectrum can be particularly fraught. Often they are not “disabled” enough to warrant ORS (Ongoing Resourcing Scheme) funding for those with high learning needs. Filling in the paper work for ORS is an art form in itself, where parents must detail every single thing that is “wrong” with their child. Brown says many find it too heartbreaking, and give up. Many can’t face the bureaucratic battle while they’re also coping with a difficult child.

Vasantha Naidoo has a disabled daughter and is on the board of Disabiity Connect.

Disability Connect chair Colleen Brown. Photo: Supplied

"There are various ways to access information and navigate the system but not everyone knows about it," she said.

"It's a whole new world for you and you don't know where to start. The Ministry [of Education] doesn't want to talk to you because you are a problem. You are too needy and demanding. If your child is lucky enough to get ORS funding then you are OK. But if they don't, they slip under the radar. Just filling in the forms is an art form."

She fears the difficulties will mean the whole disabled community is going to be left behind.

"As a mother, fighting every step of the way, it's hard going. I can understand why a person would give up and withdraw their kids. People get to the end of their rope. They can't cope any more."

Naidoo says if she hadn't had a sister who is a teacher coaching her in the background on what to do, she wouldn't have known where to turn next.

"You have to be prepared to fight for them. You have a voice. Use it."

But she says a lot of people do get beaten down by the schools, by the system, and treated like idiots.

"Some of these parents are suicidal."

Painful years

Diana is one parent whose high-functioning autistic son Sam didn’t fit into the funding parameters for ORS.

He dipped in and out of various schools in between bouts of correspondence school. The pair of them left Upper Hutt for Whanganui when Diana heard of a school that was sympathetic to such issues – but for her, this turned out not to be the case.

“They were painful years,” she tells Newsroom.

“The school wouldn’t do an IEP (Individual Education Plan) for him. In class he would sit quietly but at home he took it all out on me. I went to the school and asked for help, asked for an IEP … I didn’t even get to the stage where the problem was acknowledged.”

They returned to correspondence school. “He was lonely. I kept trying to get him back into school. Special Education was involved, they knew of his diagnosis.

“Teachers’ attitudes need to change. If they had accepted his diagnosis, if he had assistance – someone to watch over him – do an IEP – it could have worked out. But it feels as if you’re up against a wall all the time.”

"I'm sick of feeling grateful for the crumbs I get."

“The whole area of resourcing children with disabilities in school is fraught and it always has been,” says Brown.

“The matter is compounded by the high numbers of parents who have not experienced New Zealand schooling and don’t understand the basic system let alone the ‘special education route’.

“The big question for me is – who walks parents through this process? If informed parents are frustrated – then what about [those with] English as a second or third language, or those who are newly arrived and trying to find out how to access the ECE system or primary school?”

She points out that as we get better at diagnosing children, even more resources will be needed.

Brown would like to see a case worker assigned to such children to guide them through transitions between schools, and between teachers. She is not sure if the new Vulnerable Children funding model, where the money follows the child rather than being allocated to a school, will be a good or bad development. She fears it will mean another layer of bureaucracy foisted on already overworked schools by Wellington.

Brown says some schools handle special needs children better than others and there’s a grapevine where parents can try to find a sympathetic school.

“Finding a school willing to listen to you is the key.”

She quotes one parent who echoes the feelings of many others when she said ‘I’m sick of feeling grateful for the crumbs I get’.

“All parents want the best for their children but trying to access information is a battle – one of the many you face with a disabled child.”

THAT parent

Fran has given up that battle for her youngest son, and now home-schools her 9-year-old. He and his 11-year-old sister both have autism-related issues and she continues to fight on behalf of her daughter. But she struggles to get professionals interested, plans written, and teachers listening to her.

“I’ve just been told we should move from my home town (Rotorua) as yet another specialist said that they have never seen schools like the ones we have here. I am now labelled THAT parent … schools (seem to) believe that I owe them for having my children each day.”

That’s a familiar sounding story to Colleen Brown.

“What we used to dream of was a Prime Minister who had a son or daughter who had special education needs.”

Brown says we are talking about huge numbers of children – estimates are that nearly one in four children need some sort of support. She says many parents just don’t own up to that need – “it’s not necessarily the thing to do”. There are also many who can’t afford the $750 it costs to have a professional assessment done.

“It’s a worrying, perplexing issue, and it’s not going to go away.”

"Families should not have to be fighting a battle"

Dr Jude MacArthur, a senior lecturer at Massey University’s Institute of Education, believes things are starting to improve. She says the start point for getting these children help is teacher competence, but we still have a way to go in teacher education.

“We need good classroom teachers who have a good level of knowledge on how to work with a diverse level of children in the classroom,” she said. “We also need to know that people who provide teacher training themselves come from diversity.”

MacArthur points out New Zealand has a policy of ‘inclusive school systems’, and said to a degree that is the case.

“But there are gaps in terms of teacher capability. We want to get to a stage where teachers are coming out of colleges (with this knowledge) … teachers have a responsibility to teach ALL children. And they want to be going into schools with good solid leadership. There is a high amount of variation and that should not be happening.”

MacArthur agrees there is a stress point over the children who don’t make it into the ORS funding system but still need support at school. “The question is where do you draw the line? Are enough children eligible under ORS?  -  because it does provide good levels of support.

“Discussions are going on now over what is being called Learning Support – there is a change as a result of that. But the minister has made it clear there will be no additional funding and there is a question around equity around that. If classrooms are having to draw on other sources of funding then there should be questions about if there is enough funding or not.

“Schools have been trying to dip into other buckets here, there and everywhere to make this work and that’s patently unfair. We should be listening to school principals about resourcing.”

“There are some fantastic schools doing some good inclusive education. We do have to be careful when talking about this to not just see it as a funding issue: we need to be paying attention to good teacher education; good levels of professional development; and providing the support to schools. We have good systems in place for that to happen: whether we have enough people on the ground to provide it to people who need it – we should be asking questions around that.”

That includes teachers in this area with special knowledge around the autism spectrum.

MacArthur believes there has been a palpable change from more teachers who recognise the need for schools to be inclusive, and that people who have disabilities deserve to have good lives.

”There has definitely been a change. I see that in the meetings I go to. The rooms are full. A good range of school principals now saying ‘Yes, this is the way we need to go’.

“Fundamentally you have an Education Act that gives children the right to attend their local school; it’s fair and just. Some schools do it, but what is preventing all schools from being like that?

“Families should not have to be fighting a battle to get their children to school.”

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