Monday, September 13, 2010

The Questions Asked

This is not our daughter's story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it's not an untypical story. We're likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We have deferred to their expertise and initiative for too long, waiting to be told. We didn't know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don't wait. Don't labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I'm prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don't have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It's only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You're not going to run out of extra expenses any time soon.

That's the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here's where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it's not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don't get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister's doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:
This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 
It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven't changed a bit.

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:
This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 
What’s 'meaningful learning', and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:
The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child's needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.


Unknown said...

Gio your post has changed the way I look at my world, and I thank you.

Anonymous said...

Thanks for this Giovanni. Please may I repost on humans?
There are a few options for the next child on the list, such as each school's Special Education Grant or the Resource Teachers of Learning and Behaviour, but again, there's a bit of luck about accessing them.

Giovanni Tiso said...

Humans is always welcome to anything I write on this subject and I would in fact be honoured.

I didn't get into the alternatives not to be too technical, but the Special Education Grant is a joke for many schools.

(Briefly, for those on the outside: it's bulk funded based on a school's roll, and there's no accountability on its spending. So the schools without chidlren with special needs can use it to buy sports uniform if they so desire, while for the ones in a high density areas - generally low-decile, because of higer incidence and because having children with special needs makes you poorer - it's pathetically inadequate).

The Resource Teachers of Learning and Behaviour are something, and I certainly don't want to knock what they do - I don't want to knock what anybody does in fact - but it's one hell of a drop off resource-wise from ORRS. And so the schools who really are committed to inclusion have to dip into operational funding to the point of sailing close to bankruptcy, and the children with the most complex needs miss out because it's materially impossible for them to match ORRS-type funding.

(Again, not to be too technical but our daughter will receive a teacher aide for about 60% of the time she spends at school, with a review in 12 months of the TA hours and a review in three years of the whole package.)

Russell Brown said...

Gio, you ask what has changed since 1995.

That was when we first got to grips with what was happening with our older son. And I have no doubt that things have become worse since then.

We're now fighting battles for him that we would not have had to fight even five years ago.

Giovanni Tiso said...

You came in at the beginning of that reform however, when the perverse mechanism was put in place - I cannot begin to think of how difficult it must have been. We may have even fewer resources now, and some things have become entrenched to the point that many of the people who work in the system that we have encountered think it's actually the natural and desirable way of doing things, but we have also developed a lot of coping mechanisms. Magnet schools have developed significant expertise, also in shifting money and juggling resources. Teachers and service providers are much better trained. There have been Daniels v. the Attorney General and many other struggles.

Most importantly, the wider society knows much more about these issues, and it's chiefly thanks to the stories told by some of the people who have been through the last decade and a half. The fact that you and Hilary shared yours was incredibly valuable to us, which is why when we got our news you were the first people we told outside of our most immediate circle of family and friends. Those are resources too, and they have helped us and continue to help us immensely.

Megan said...

"This is not our daughter's story, so much so that I won’t even call her by name."

That's kind of the whole point, right there, isn't it? It's not about your daughter, or you as a family, or her right to an education or any of those things, but about the gargantuan system.

It makes me very, very sad. I hope you guys are at least able to enjoy a little bit of today's "yellow happy". :)

Ben Wilson said...

I've got a better idea of your point about needs vs rights finally. You've made it before but I didn't quite get it.

wrt ORRS, my boy will be one of the people you speak of as 6,951 or over - our discussions with the people who make the calls pretty much ended in "don't bother, he's too high functioning". And when I went through their criteria, that was so. I'm surprised even profoundly autistic children pass, and the expectation you should feel deeply grateful hovers there like the gratitude that people in Christchurch have that at least no one died.

George D said...

I read to the end of that post, and I feel not exhaustion, but anger. (a luxury for those who still have energy).

Because nothing about this is inevitable. The neoliberal parsimoniousness and third-way managerialism, that has to ensure that every cent meets some "outcome", never mind the very real young child which is defined as a series of tickboxes.

I'm angry, because the New Zealand Labour Party (am I ever not angry at them), not only accepts such a set of affairs as right, but creates and enforces them. The soft face of neoliberalism. And then they wonder why so many feel ungrateful to the "nanny state". Harsh parsimony is the way in any of the assistance ministries, in order to ensure the right 'incentives' and the 'efficient allocation of scarce resources'.
Unless you're one of the groups that the right and their Labour accomplices favour - in which case you'll get given huge amounts, as of right. Superannuation (to even the richest), the road industry, weapons manufacturers.

Nothing about this is inevitable.

Giovanni Tiso said...

I know your hopes weren't high the last time we spoke about this, but I'm sorry to hear you're going to miss out Ben.

There are two aspects to the system: one is that people who fit the criteria still miss out for the reasons I've mentioned in the post; and the other is that there are children excluded by the criteria who really need the help. The former pose more of a problem for school, family and the community, but the fact that they aren't catered for allows for the latter to be treated as if they didn't have needs at all. It's an utterly perverse mechanism, and one that Tom Scott glimpsed so well from the start.

Ben Wilson said...

It's a highly conflicted bitterness, Gio. I'm not happy we can't get ORSS, but that is outweighed by the happiness that we don't "need" it. Which is how that incongruous gratitude arises.

There was a real click with your point about the bizarre obsession with the autism label, how important it was to attach the label at the start, then how important it was to unattach it afterward. All institutionally driven, of course nothing changed in the child, or reality. But it's a real emotional wringer for the parents because it actually really does matter. I think the good doctors making the diagnoses are simply cynical about the system. Our referral came from a doctor whose own child is autistic, and I think that helped a lot, she had been through the emotions herself and knew how best to put it to us.

Giovanni Tiso said...

I'm not happy we can't get ORSS, but that is outweighed by the happiness that we don't "need" it.

That's only natural, and we'd be happy knowing that our daughter wasn't in the top percentile of children with special needs in the country too, but it presupposes that it's up to the state to define "need". Once you allow that to happen, as a society, you're already conceded all the ground.

"Right" is different. "Right" says that my daughter and your son need to be given all the resources necessary to allow them to access the same education system as their peers. This in practical terms could be achieved by getting rid of ORRS and making each child who has been identified (formally or informally) has having special needs during preschool or the first term of primary school to fill out a form like the one used to determine the number of teacher aide hours after you've got ORRS funding. Then you could develop a best practice regarding the tailoring of resources on the needs of the child around that - but only so long as resources could be readily accessed, on tap, as it were, just like if you break your leg you might have to wait around at A&E a bit but eventually somebody will mend it, because there's no cap to how many broken bones people are allowed to have.

(Filling out that form took just a few minutes and was surreal. All the information was of course already in our ORRS application. It was another (!) set of questions to answer. But so much more practical and straightforward.)

Megan Clayton said...

This in my opinion is your finest writing yet and it is both apposite and heartbreaking that it is on this topic. I find my reaction is equal parts gut- and political, knowing a little, as we do, your lovely daughter but also the wider system of which it seems to me this is the key feature:

we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances.

I agree with George; that this is a failure of the left, that it is a product of neoliberalism and that it is false, shameful and unnecessary.

This is not a poem.

rob said...

It's heart-breaking for you, as a family. And shameful for us, as a nation. There's a kafka-esque evisceration that occurs with form after form, re-telling the same stories, and trying to be honest even when you know a small lie would help your cause.
We were, in that sense, lucky: our boy has Down syndrome, and accessed early intervention very early.
But even there, surrounded by experts and caring people, noone made the diagnosis of autism. We- helped by some friends- had to do that ourselves, though when the time finally came for the paediatrician, he hardly looked up before signing up.
And then one is on the inside of ORRS, hardly the summit of one's dreams for one's child, but so much better off than those on the outside.
Until some political decision comes along. There are rumblings right now that the 'special schools' cost too much. Resources could be allocated more effectively.
At least you can, for a moment, feel you are not obliged to do battle with a shapeless monster made up of forms and faces and corridors.
All the very best.

Emma Jean said...

*I think my comment is perhaps too pragmatic or didactic but I really feel the need to make it anyway - my apologies in advance if it sounds like preaching to the choir.* Having spent all my adult life supporting family members with health issues this commentary feels very familiar. I think about my family who are not "middle" but "lower" class and the problems which have ensued from taking time off our tenuous employment to attend endless meetings with health professionals. Trying to explain complex health problems that I don't understand to someone who has no time but more knowledge than me and a checklist of symptoms to tick off in front of them. The amount of knocking on doors and being referred on and on around a system which Giovanni describes brilliantly as always being on the verge of collapse.
I kid you not, I now attend workshops and monthly sessions with other 'caregivers' (dreadful word). It sounds naff, but don't knock it 'til you try it. Get all the support you can to stay sane (and don't get stuck at home if you can help it). And thanks, once more, for eloquently revealing important truths about and for us all.

Paul Williams said...

Giovanni, I've got a list of vaguely inadequate responses that I'll not bother you with. I'm a father of three. I entirely understand how overwhelming the need to provide for your kids is. The compulsion to make appropriately qualified experts immediately attend to their needs - this is what a father does, this is what a father is. As usual, your writing conveys a feeling I completely understand and I only wish I had something practical or useful to offer.

Jane Robertson said...

Thank you!

Jessamine said...

Faced with the going through the process you describe for our two sons and advised that there was little chance of ORRS funding at the end of it, we returned to the UK, where we went through a similar mill, but at least at the end of it we have secured packages which not only meet our sons immediate needs but recognise and build on their strengths and gently stretch them to meet their potential. Of course we dare not move to a cheaper area to get some outside space (we currently live in an apartment, which isn't ideal) because if we cross the borough boundary the whole thing has to be re-negotiated and only the rich boroughs could afford the package anyway... Yesterday in the park our three year old announced that she would like to keep a stick she had found so that, "When I get my dog, I can throw it for him". Sadly our lease prevents us from having so much as a goldfish, let alone a dog. And sometimes we are homesick.

Giovanni Tiso said...

I am humbled that some of you chose to share your own experiences in the comments - thank you so much for that.

"And then one is on the inside of ORRS, hardly the summit of one's dreams for one's child, but so much better off than those on the outside."

It boggles the mind that a system has been created that reshuffles the circumstances of children in need so arbitrarily, making you grateful that your child cannot do something because it is the one thing that might get them over the all-important line. Of course even though we passed this time we have yet to come to the review, when any progress our daughter has made in the interim will become something not to be celebrated but to be dreaded, if it means cessation of the support without cessation of the need.

And Jessamine, the thought of having to emigrate in order to have your child's needs met is heartbreaking. I can't say it doesn't cross my mind when I hear how much more generous the provisions are in Australia, but what a decision to have to make. Incidentally it is never part of the discussion about emigration, is it? Our best minds are always supposedly leaving because of grievous tax burdens, or tall poppy envy, never because other countries might have better social provisions.

Stephanie said...

Kia ora mai Giovanni - thank you for sharing with us your story of your trials. I wish you and Justine strength and endurance. Your daughter will grow to adulthood, and with your care and love, to make the most of her gifts. It will be a struggle but good will come out of it. Small goods but still goods.

I have young friends who are diagnosed with autism, and who lead wonderful lives within their own terms. Not our terms, but theirs.

Helen Lehndorf said...

Wow - some friends on twitter recommend I read this post after I was complaining about my process with our five year old son over there.

We are at a terrific supportive school now, but the pre-school years were harrowing for me, a real minefield. We were lucky to get ORRS funding, but only because I understood what was at stake and was able to fill out the forms in the 'right' way...

Anyway - thanks so much for posting this. It was comforting to read, as someone who is negotiating very similar territory.

Best to you and your whanau-
Helen Lehndorf

Giovanni Tiso said...

Thank you Helen
I'm glad you found a supportive school for your son - our daughter started five weeks ago and it has made a world of difference for us as well.