The “B4 School Check” is an interview process that is meant to identify any issues a child may have before they begin school. The interview is done through a family’s usual GP, and includes forms that are filled out by the parent (and potentially forms filled out by a teacher in the child’s life too). The main controversy over the B4 School Check is around the inclusion of the SDQ, that’s a “Strengths and Difficulties Questionnaire” that aims to identify behavioural, emotional, social (etc) issues, beyond the other screenings for basic health that are included as part of the B4 School Check.
The B4 School Check is meant to be voluntary, but the official aim is for every child in New Zealand to take part, and there is plenty of pressure placed on parents to do so. Indeed when forms are sent out to parents and medical professionals talk to parents about the B4 School Check, the wording and behaviour is very much of the sort that you are expected to take part, and are expected to explain why you won’t if you refuse.
At this point you may be feeling a sense of deja vu. Haven’t I already addressed, and somewhat come out in favour of the SDQ in the B4 School Check? Yes, I wrote two posts to that effect (though I did openly acknowledge important concerns even back then) in 2012 when it was doing the rounds in the national news. So why am I returning to the topic, and why am I now very openly and unambiguously advising you to not put your child through the SDQ component of the B4 School Check?
First off, the issue has arisen for me again because my youngest (who has just turned four) is now being expected to take part in the SDQ, which was sent out to be in a very presumptuous manner (“fill out the B4 School Check and bring it with you to his immunisations”). Immunisations I of course intend to do, but I shall be openly refusing the SDQ, and I intend to refuse to engage with them in explaining why since I owe them no explanation and don’t want to put up with their rote-learned counter-responses. It then occurred to me to see if any further news items had come out about the in/appropriateness of the SDQ in the B4 School Check.
Yes, there was a news piece from June 2013 looking at the positive and negative aspects of the SDQ, and noting some shortcomings of related data collection, but the piece that really got my attention doesn’t appear to have made it to major newspapers or news feeds (at least not that I have been able to find yet). Robert Miller, who has an impressive academic background in Psychiatry and Neuroscience (particularly around schizophrenia) – as well as relevant personal experience and insights – wrote an article in December 2013, called “B4 School Report: A Critique of a Child Health Screening and Intervention Program.” It is a 65 page beast, but absolutely eye-opening, and pushed me from largely sitting on the fence about the SDQ’s use in the B4 School Check, to being firmly against it. It made me see my earlier posts on the topic in an entirely different light, and I feel obligated to correct the record on my views on the SDQ’s use, and to explain why I have changed my position.
The summary on pages 4-5 of the article are an excellent overview of the very serious flaws in the B4 School Check’s utilisation, monitoring, and intent for the SDQ. I will highlight some issues that are new and key from my perspective (and in response to my earlier posts), but I strongly encourage you to at least read those two pages for yourself, and then read the related sections in his article to find out more on the areas you are concerned about too.
The first issue I want to raise is the very concerning level of “false positives” that come from the questionnaire; where it identifies a possible or probable issue with the child that is not in fact an issue. I originally thought this wasn’t the genuine concern it was made out to be; that surely a false positive would only really matter if it was a diagnostic instrument, not when it was simply a screening tool. I thought a false positive for identifying a potential concern in a child was just an over-cautious good, not a bad thing… The problem is I didn’t understand the broader context of why these false positives would be of such serious concern. As Miller puts it:
“The problem of the high rate of false positives using the SDQ raises ethical concerns. Given the personal sensitivity of issues about mental health data, the history of abuse in state mental health facilities in New Zealand, and the lack of ethical scrutiny of the B4 School Check (and therefore the lack of transparency on the fate of data collected, and its possible future uses), this is a cause for serious concern.”
I hope you see how that casts a very different light on the false positives. Neither did I realise just how bad the false positives rate was: “…nearly half of those where any disorder is judged probable by SDQ (in a community sample) did not merit any diagnosis.” (He provides a study reference in the article.) Making this even more worrying, he notes that we need to be mindful of the growing international concern over diagnostic inflation, which brings with it issues of overmedicalisation. Which is all to say that taken in true context – the potential abuse of the SDQ findings, their poor success percentage, and concerning modern medical trends – those false positives are a lot more serious than I thought they were.
I also had an incomplete understanding and appreciation of the retention of the SDQ data. I understood that it was going to stay on a child’s record for 10 years, but Miller says the following in his article: “In modern health research, a routine requirement on which ethics committees insist, is that the future of personal data be specified. Often a date should be specified by which time the data is shredded. However, there appears to have been no ethical scrutiny of the SDQ.” This prompted me to search again through the actual Government guidelines, to find clarity. They state, rather ominously, that identifying data must be held for a minimum of ten years. When you take this fact in combination with the very concerning points Miller raises about the lack of protection, potential for misuse and abuse, and lack of firm or ethical barriers around interdepartmental access to the data, it’s hard not to be worried about who will get the data and how it may be used. Miller points out not only the recent many instances of the Government mistakenly leaking and purposefully cross-using data, but also the problems that can arise when different styles of governments may come into control of the data:
“...[G]overnment policies and how they reflect public perceptions can change. Once an assessment of a person’s mental health status is written down in official documents, it is hard to rule out the possibility of its being used unfairly against the person concerned at a future date. What often happens in bureaucratic systems is that data systems which initially are subtle, nuanced and non-categorical come to be taken, on the basis of their black-and-white and seemingly-objective nature (however subjective and error-prone they really are) to be more solid as statements about individuals than is justified. Data can then gradually be “morphed” into more simplified categorical systems. It is a real danger.”
Miller also raises concerns about the true intent of the data being gathered, which all ties into cross-departmental access and use of the data: “The motives behind use of the SDQ within B4 School are not transparent. What is presented as a screening tool for incipient mental health issues appears, on closer examination, to be motivated mainly by an attempt to identify at an early age youngsters with potential in later years for disruptive behaviour, delinquency as teenagers, and, as adults, criminality.”
If you want to understand how and why he reaches that view, further detail is provided in the body of the article (for example see pages 17 to 19).
In the second of my original posts on the B4 School Checks, I was not impressed by the argument against the SDQ that turned on concerns about the stigma of mental health. I did a solid and righteous attack on those who think stigma concerns are a good reason to avoid using the SDQ. My arguments, in the context they were presented, were sound (I believe). However, the true context again varies from what I understood back then. I thought the data would be protected from wider access and thereby possible misuse, that is clearly not the case since there are inadequate barriers to protect from cross-department use and from the data being accessed wrongly by the public. I thought the SDQ was primarily for screening rather than diagnosis and therefore stigma wasn’t a crucial concern for the SDQ itself, I neglected to appreciate the importance of SDQ results themselves being recorded regardless of whether they lead to a diagnosis, and the huge false positive rates of the tool. I thought the benefits of potential treatment far outweighed the negatives of stigma, but again the huge false positive rate and longevity and accessibility of the data, tips this balance for many children.
There is concern too about flooding an already under-resourced system with the further step of figuring out whether the child really does have a condition that needs help, in the face of all those false positives. Here I want to add a major point that I think I underappreciated when I first tackled this issue: If a child does have a real concern – something that has made early childhood teachers and parents worried – it is extremely likely to have been already identified at an earlier age. If it is a borderline issue or one that the parent and teachers are not actually concerned about, then there is an argument that perhaps it does not require intervention in the first place. Again, in the current environment of overdiagnosis, overmedicalisation, and the general “medicalisation of normality” that turns natural variation into a diagnosis and label, we should perhaps be weary of the rush to identify and “fix” individual differences.
Even if you are not convinced that we are in such an overdiagnosing society right now (fair enough), you need to be aware that the SDQ is not some fantastic and strongly reliable test for identifying these issues in the first place (thus all those false positives I keep going on about). There is likely a better – and more appropriately targeted – way to approach and deal with these worries about the children who may otherwise slip through the gaps. The way the SDQ is being administered and the data collected and stored, appears to be far from ideal.
One final point for your consideration: The Government does not appear to be collecting data with the purposes of finding out how well the SDQ is operating; how accurate, helpful, or effective it is. It is collecting data about numbers of participants and numbers of referrals, but that appears to be as far as it goes. This is just one more flaw in the ethics and monitoring of the SDQ use in the B4 School Check.
These are only some of the issues Miller raises. If you find them unconvincing, or inadequate reason to discard the way the SDQ is currently being used, I can only suggest again that you read his article and form your own conclusions by looking at the research he uses and references. For myself though, I am concerned enough that not only will I not let them apply it to my sons, I am also advising you to not let them use it for your children either. If you are worried about your child’s mental or behavioural welfare, I suggest independently talking to your GP or some other appropriate specialist. You can also raise your concerns with their kindergarten teacher, and if necessary seek a referral to Special Education services to get your child assessed and to get them help through that portal. I will also remind you of what they will not tell you clearly: You don’t have to do the SDQ. You can at least request to only do the other health checks and immunisations as you see fit.
If you do choose to take part in the SDQ for your child, do so with full knowledge, make your consent meaningful, and encourage other parents to do the same. I hope that this post has gone some way towards helping to make your consent that much more informed.