Protecting the Privacy of Special Students (a case study of a fight won).

The summary of the story I’m about to tell you, goes like this: You will no longer find the National Standards data for Special Schools on either the Ministry of Education or Fairfax’s websites, because of a successful argument that sharing the data was a breach of privacy.

The longer story goes a little something like this:

By Alan Cleaver, via Flickr

When I became a Board of Trustees member of my son’s new school, I became aware that no school should publish National Standards results that could be used to identify any specific child’s achievements.  The Ministry of Education’s (“MOE”) own guideline, is that any grouping containing 4 or fewer children should not be published, due to this privacy concern. In their own words aimed at Trustees: “Where the total number of students in any cohort you are reporting on is small (4 or less) it is likely that the school community will be able to identify this group and their individual levels of achievement. Therefore this data needs to be excluded from any public reporting.”

It occurred to me that by the same logic, neither should any school publish an 100% result across the entire school, because that automatically identified the achievement results of every single child in that school. For example, an 100% “well below” achievement result for a school tells you they all effectively failed that subject.

Yet this is exactly what happened when both the MOE and Fairfax decided to publish the results of Special Schools on their respective websites. The MOE’s website is called “Education Counts,” and Fairfax’s website is “School Report” via their site. I always felt the publication of my son’s school’s data was a cruel breach of his privacy – a sentiment I shared in a post from September 2012 – but now I felt I had an argument I could confidently present to get the data taken down from both of these widely used and easily accessed sites.

I had to decide who to approach and in what order. Ultimately I decided to first approach the MOE, because getting them to remove their data would give me a stronger argument that Fairfax should do the same; I figured Fairfax had sourced its data from the MOE site and so showing that data was erroneously published would make Fairfax rethink its own sharing of that data. But because MOE would later insist that the data Fairfax had could only have come directly from the school, my son’s old school would also get pulled into the communications along the way.

Some of these parties were apologetic, some compliant, some borderline combative, and it was interesting to see which organisations fell back to what types of communication when dealing with me; after all, I am just one mother approaching them out of the blue.

Why though, why did this matter to me? (And why should it matter to you?) This wasn’t just about the breach of privacy (though that was always my primary motivation). And this wasn’t just about my son – I wasn’t just arguing on behalf of my son or only for his school. To me this was also about the misuse and inappropriateness of that data when applied to Special Schools in the first place: I might not to able to stop the MOE demanding the data for themselves, but I felt I could and should stop the public and other organisations misusing and misinterpreting this inappropriate data. Anyone who looks at an 100% failure rate in Special Schools and thinks that reflects the learning, progress or achievement within those schools, is already being given a wrong impression about the value of the work these schools do every single day.

The first email I sent was to the MOE on August 22nd 2013. They originally claimed they would never have published data that would breach any student’s privacy even when I explained the issue (though they were willing to check his specific school if I named it, which I refused to at that point), and told me to take the matter up directly with the school. I had screenshots of the MOE’s own website – Education Counts – that displayed the 100% “well-below” figures for a number of Special Schools, so I confidently yet again pointed out they were in fact making privacy breaching data public, and pushed them further to investigate the matter. At this point they did decide to have the matter further investigated at their end, and ultimately decided they should have blanked out all the 100% figures for the Special Schools and set about fixing the data accordingly. They even ended up apologizing for any upset caused to me, and thanked me for bringing the matter to their attention. So far, so good.

During our correspondence, MOE claimed they were not responsible for the data that was available through the Fairfax website though – which I openly took issue with, since the data Fairfax was using was clearly readily available through the MOE website. Still, there were two more parties I apparently had to deal with: My son’s school – which the MOE claimed was responsible for Fairfax’s data access (and therefore the privacy breach at that end) – and of course Fairfax itself.

Here’s where it gets messier (and I am doing my best to un-messy this thing for you along the way): My son’s old school then stated very clearly that they never provided that data to Fairfax. In fact, they had the same concerns I had about the information breaching privacy, so had chosen not to respond to Fairfax’s Official Information Request for the National Standards data in previous years. You see the hole, right? Where did Fairfax get the privacy breaching data then? MOE stated it wasn’t them, the school stated it wasn’t them, what would Fairfax say?

I should add that my son’s old school was very supportive of what I was trying to achieve; they agreed with me that the National Standards data isn’t really relevant to our kids, and that it shouldn’t be publicly available regardless. Their communications with me were swift, polite and supportive. I was left wondering though, that considering their own awareness of the fact that announcing an 100% failure rate would have been a privacy breach, why were some other Special Schools (this one for example) publicly using the 100% failure figure to make their case against National Standards in news stories? Announcing to a news organisations the exact results of every student in your school, with the purpose of it turning into a National news story, is hardly respecting those students’ privacy. I understand what those schools were trying to achieve through the publicity, and sympathize with their cause obviously, but I do think the point and story could have been told without announcing the 100% figure. That aspect of this whole thing still bothers me. Anyway, back to Fairfax…

Fairfax was a bit slow to respond, but after a couple of my emails I did receive a phone call assuring me that they are concerned about privacy issues and had tried to be hyper-vigilant with what data they published (for example, whereas the MOE wouldn’t publish 4 or fewer people groupings, Fairfax was apparently using a “10 or fewer” guideline to add extra levels of protection). However, just like the MOE, they hadn’t realized the logic worked at the other end of the scale too: Where you have an 100% outcome of any sort across a school. They were very polite and were glad I’d brought the issue to their attention, and removed all the relevant data for all Special Schools. Job done.

The story should end there, but you remember how the MOE claimed Fairfax could only have got the data directly from the schools? Well in the meantime – while waiting on Fairfax’s reply – I had gone back to the MOE and requested that they also approach Fairfax to remove the data since the school wasn’t the source of the data Fairfax was using (meaning, the MOE website was the (or a) likely source). The MOE insisted I first give them the name of my son’s school so they could investigate the issue, which was a piece of information I had so far withheld from them since the issue affected all Special Schools and I didn’t want them placing pressure or stress on my son’s school. At this point I felt I had to name the school, and I then warned the school too that they would be hearing from the MOE. Later, the MOE returned to me saying they would approach Fairfax and ask them to remove the data, but only for my son’s school.

At this point it should be clear that I am not impressed with how the MOE has dealt with the matter on the whole: They initially claimed they’d have never allowed the data through, even though it was there in black and white for all to see; then they claimed the school was the source of Fairfax’s data, even though it wasn’t; then they said they’d only approach Fairfax to remove my son’s school data, ie not all affected Special Schools, which strikes me as unfair and hard to justify considering everything they knew by that point. If you’ve read and followed the details of this post, you’ll understand why I feel like they’re the villains of this piece. Nevertheless, the MOE did eventually remove the offending data and did apologize and thank me, so if they’d just admit the data was irrelevant for these schools in the first place everyone would be happy! (No, I’m not holding my breath.)

Was it worth two and a half months of my time (and over 20 email communications)  to pursue getting the data taken down? Yes, absolutely it was. As I said above, I think the data is a privacy breach and ripe for misuse and abuse, as well as being fundamentally irrelevant data on our kids. I do believe that by acting to protect my own son’s privacy, I have also acted to protect the privacy of all the other students in those Special Schools. I do think that as someone with a law degree and a little bit of time on my hands, that it was suitable someone like me take the time to argue and force the issue. I do hope too that raising the concerns about the relevance and potential misuse of this data will get these organisations yet again pondering what the point is of collecting data that doesn’t actually represent the achievements or progress of any of the students in those schools.

National Standards data doesn’t tell you if a nonverbal child learnt to talk, if a child with limited fine motor skills can finally hold a pencil, or if a child who used to be violent and out of control is now able to sit at a desk for more than 5 minutes. The 100% failure / “well-below” achievement data for these schools, only tells you that they are Special Schools with challenged children, which you already know. It casts all their achievements as teachers and as a school and as students, in the form of a negative. It screams “failure” to the public and to parents, when it should be shouting its version of “success,” or at the very least, should be trying to identify those successes in some meaningful way. It’s like a kick in the guts as a parent, and I have felt that kick take my breath away and leave me in tears, I’ve felt it make me momentarily lose sight of all the wonderful things these schools do with our children.

Accomplishing this outcome from the MOE and Fairfax has given me back some of the confidence and motivation in life that I’d been lacking lately: I can make a change for the better, what I say can matter. I may have only got some data taken down off two websites, but I’ll take my victories where I can get them, and I am proud that I successfully stood up for my son.

This entry was posted in Autism and Law, Exclusive, Schooling and tagged , , , , , , , , . Bookmark the permalink.

7 Responses to Protecting the Privacy of Special Students (a case study of a fight won).

  1. I wish the government will scrap National Standards all together, they help no one and put a one size fits all approach to education which does n8t suit anyone.

  2. Shirley says:

    Well done A & O! What a terrific outcome for your efforts.

    Thank you so much.

  3. Chris says:

    Thank you. I have no connection to a school of the nature you discussed above but am sure that marvelous work and learning is taking place. I thank you for taking a stand for our children as a whole.

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