A breach of trust

I am an ACC Sensitive Claimant.  That means ACC, a government department, partially funds my therapy costs.  It also means that Allison has to regularly report on my progress, and sends requests for more funding.

When I first claimed for assistance under the ACC scheme, I was assured that the information provided to ACC would be kept confidential.  That the information didn’t go outside of the Sensitive Claims unit, and that only those people directly involved in my case, would access my file.

I struggle with trust issues, so needed this reassurance.

Those of you who have read my blog for any length of time, will be aware of the struggles that I have had with ACC.  They have mislaid emails that I’ve sent them – emails containing incredibly sensitive information.  They have sent me incorrect letters – one told me that my therapy support was being stopped, when it wasn’t.  They regularly change my case manager without letting Allison, or I, know.  There was a long struggle over my level of impairment.  What all of this has meant, is that my faith in ACCs ability to carry out their role, is pretty minimal.  I dread the reports for further funding that Allison has to do, as it usually means that I will be sent to yet another stranger for an assessment…

Despite the significant drawbacks associated with ACC, it is the only way that I can afford therapy.  This means, that it is the only way that I have been able to maintain a job, and keep being a (productive?) member of society.  It would be questionable as to whether I would still be here if it wasn’t for this assistance.  That may sound overly dramatic, but it’s possibly closer to the truth than I would care to admit.

So, I am thankful for the assistance I get; but, am also incredibly wary of the strings that are attached to that assistance.

A couple of weeks ago, those strings became entangled beyond recognition.  It came to light that ACC had sent the details of about 9000 clients, including those of some sensitive claimants, to an ACC client.  Yes, a fellow ACC client… not any sort of health professional, but a member of the public.

Before this incident, I knew of one other incident where a fellow claimants file had been sent to people unrelated to her case. So, this sort of breach doesn’t seem to be a one off error.

Since this incident became public:

While I can understand the chain of events, much of it seems to detract from some of the core issues that this incident has raised…

  1. Why was there a document with ACC Sensitive Claims Unit client information on it, being circulated to anyone outside of the unit?
  2. What is the purpose of such a document to begin with? The cynical part of me wonders if it’s about highlighting “problem” claimants, or pitting the units against each other.
  3. How could the document be sent without basic security, such as password protection?
  4. How often does this sort of breach happen?
  5. What is being done to tighten privacy and security within ACC?
  6. Why didn’t ACC act sooner on this breach?

But, the most important question for me, is…

  1. Why should I ever trust ACC again?

ACC has files which contain some of my darkest, most shameful secrets.  How can I trust that the information won’t accidentally end up on the doorstep, in an email, or faxed; to someone who has nothing to do with my case?  I can’t.  ACC have proven that they cannot be trusted.

So, where does that leave me?  To be honest, I’m not sure.  As my ability to see Allison is dependant on ACC funding, and she must report any new information about my abuse, and it’s effects on me; she has been placed in a precarious position… I’m meant to be open and honest with her, yet if I am, that information will potentially go back to ACC.  How can I be open with Allison if she is reporting to an organisation that has proven to be untrustworthy?

There have been lots of stories about the privacy breach within the media, and many have waved the “isn’t it awful that sensitive claimant information was included” flag… but, what they don’t seem to grasp, is the devastation that this has on an already vulnerable group of people.  As sensitive claimants, our trust has already been violated in one of the most horrific ways possible, and to have that again shaken by the organisation that is meant to help, is destabilising.

I know ACC cannot be perfect, but they need to be responsible and accountable.

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20 thoughts on “A breach of trust

  1. CG,

    You are SO right … an organization such as ACC, even above many others, needs to be responsible and accountable. The consequences of breaches are high in ways not everyone fully grasps, but you have described those consequences very well, here.

    In some ways I wish you weren’t so aware, so intelligent, and so good at hunting down information! You’ve really stayed on top of the news on these matters, and the ensuing chain of events. You’ve thought out all elements of the scenarios involved. If it were me … and I can only say this *very* hypothetically, which makes the hypothesis lamely useless … I’d probably be a lot more lazy. I’d be outraged … pissed. But I wouldn’t know what to do about it, so I’d probably turn away in sheer frustration. And you know what? As a result of being less attentive or less capable … if my lame hypothesis still holds … I’d care less. I’d hope. Ignorance … the last bastion. Hey, it sometimes works for me. 🙂

    Either way … I hope that you can try to toss the unknown and the “out of your control” into a box somewhere. I realize how impossible it is to ask that of you. But you know, you’ve been put in an impossible situation. It’s not fair. And as much as the imagination can wander very far about the consequences of the release of your “darkest, most shameful secrets”, you yourself are not to blame for any of it. That’s why you are a “survivor” … because the journey started with victimization. You are not to blame, and though you feel shame, I have faith that you should be truly shame-less.

    I also realize how ridiculous it is for me to say these things.

    Speaking practically for a moment, while ACC is a mess, I like to think (blind faith?) that organizational fiascos like this, which put governments and other organizations negatively into the spotlight, tend to produce a “correcting” influence. I know full well that that effect is not guaranteed, nor is it certain that the effects produced totally take care of the problems, or even the most “important” or consequential problems. But all I have is faith that *some* progress may be made, some safeguards will be set.

    Please hang in there … I would much rather see you successfully use your own coping resources, and those available to you, and have you continue to receive this assistance. As a last ditch, if you MUST leave ACC, perhaps your large social network following can pitch in for the “CG Therapy Fund”? I truly believe that if you try to keep the swearing down, we could find you a passable therapist, within a reasonable commute from your home. 🙂

    My apologies for a *very* presumptuous reply … I’m just concerned.
    Michael

    • Hi Michael,

      I saw what you did there… sneaky attempts to hand out compliments, and it isn’t going to work 🙂

      Ignorance can be bliss… but, it can also be dangerous. I’m sure there’s probably a balance that can be met somewhere in there, but I’m not at that point. It probably depends on the issue, and how it impacts on us as well. Because trust is such a big issue for me, this whole thing is really scary.

      Intellectually, I know what you mean regarding shame; but, it’s not something that I can fully grasp. It still feels so shameful, disgusting, and as if there is a huge boundary violation. The situation with ACC means that I have no control over what happens with the information that I have provided them – and it almost seems as if they don’t, either.

      I’m hoping that there is a corrective force, but in reality, I suspect that it has become a political story, and that will be used to cover the ACC situation. They are a huge department, and that often means that change is difficult without a huge shift in culture, policies, and procedures.

      I will be ok… I always am 🙂 But, thank you for your concern…

      Take care,
      CG

  2. A very precarious situation. I used to work in Medical Records in the states and the rules, regulations and laws dealing with them are quite stringent. Since moving to Britain, I am always in awe in how little regard seems to be shown towards medical records. They are left completely in the open behind the receptionist in most surgeries. I am not saying the US’s way is the best way but I do think the UK and, from the sounds of it, your country could use some serious revision in the management of sensitive medical info whatever the agency dealing with them. The UK has been known to leave info just lying around on the tube!

    At any rate, I hope you can continue to get your care.

    • Hi Meredith,

      The system you describe in the UK, sounds very similar to the system we used to have here. Now, all the GPs are pretty much forced to go electronic with their records – it’s the only way claims for some funding can be completed.

      ACC have digitised records, but it sounds like they aren’t very secure – see ACC’s records storage ‘primitive’.

      I really don’t think that they realise the impact this has on any of the claimants… it smacks of arrogance and disregard for the people who go to them for help.

      Thanks 🙂

      Take care,
      CG

  3. This makes me so mad. How can ACC be so utterly and totally incompetent? I’m so mad that they keep screwing up, and so mad that they keep screwing things up for you.

    I hope Michael is right and there is a “correcting influence”. I know from my own experience in government that this does happen, so I hope it happens in this case.

    Please do hang in there. You’ve been making such great progress with Allison. I would hate to see that stalled.

    ((hugs))

    • Hi Kerro,

      Thanks… I hope you’re right, and there is a correcting influence that comes into play. But, as I said in my response to Michael, I worry that the political story has now overshadowed the privacy issues that are obviously rife within ACC.

      Take care,
      CG

  4. I don’t think you are far off with the cynical presumption of the file being problem claimants. That is the only logical reason I can find for an Excel document to contain details on claimants.

    I work as a systems engineer in IT and I cannot get my head around how this happened accidentally nor how ACC supposedly has an insecure database. I must admit my expertise is not in databases or security.

    The realist in me would not be surprised if this is in fact somewhat the truth. Since this is essentially a public forum I shall not comment further on Government IT infrastructure.

    I am hoping that there is a bit of media exaggeration here and only minimal information of the sensitive claimants was sent out. However this is too much information.

    I also feel there is more to it than is being reported. It seems strange to me that a document was randomly selected and accidentally sent to a former National Party employee and supporter and a personal friend of the former Minister of ACC. (conspiracy theory??)

    From the outside it seems ACC has a lot of problems both with management and their internal systems. Hopefully this breach makes it a priority for the Government to fix their processes and systems.

    For those who have been affected I hope ACC have come clean with what was sent out and that nothing more sensitive than contact details were sent out.

    Well take care of yourself and I hope things get better.

    • Hi Ringonz,

      I was wondering if I was being a little paranoid with my cynical reasoning; but, it’s one of the few reasons that makes sense.

      I talked to Allison about it last week, and she said that it sounded like the information released was “front page” information. I’m not quite sure what that means, but I’ve seen some front page information that includes diagnoses, and some that don’t. Considering how much I try to hide my mental health issues; the thought of my diagnoses being associated with my name is very scary. There is so much stigma surrounding mental health issues in society.

      I really hope you’re right about ACC being forced to change…

      Take care,
      CG

      • I hope I am right too and ACC and government as a whole can change.

        However I think Kerro is correct in saying it is difficult for government to change, but we have to be optimistic here. You never know. There maybe an independent inquiry and a whole heap of time and money spent on fixing their operations and a change in focus on targeting the people who are abusing ACCs services rather than targeting a group of people who they think can be easily swept under the carpet.

        Obviously privacy and security should be important for the government, so there must be some department who has worked out how to secure information. I am sure Defence don’t have the type of insecure system advertised by the media and Ms Pullar. However I am a little sceptical about the levels of record insecurity detailed by an ex-political party manager and the media.

        • Hi Ringonz,

          If there is enough pressure, there might be change. That is part of the reason why I worry about the political story overshadowing the privacy story… it’s a great distraction, and takes some of the pressure off ACC.

          I’m also a little sceptical about believing the media and Ms Pullar, but I do know that there have been other serious breaches of privacy within ACC.

          Will wait to see what comes of the talks regarding inquiries…

          Take care,
          CG

  5. I would be mega freaked out and this is a very troubling turn of events. I too am going to hope for the best. I know how I’d feel if my privacy was violated like that.

    I imagine there’s a loss of control there and since it’s one of the most intimate areas of your life, the breach is deep on many levels.

    I hope that it will turn out the information communicated wasn’t anything too bad and I hope someone flogs the idiots in charge.

    • Hi CI,

      When I called ACC last week to see if my name was on the list, they told me that the information wasn’t as serious as the media were making out. It was said in such a falsely comforting tone, that it felt patronising, and totally at odds with the implications of what had been done. It was a happy tone, rather than a concerned tone. To be fair, I imagine this woman had been inundated with calls all day, and was sick of repeating the same answer to each caller… but, it again shows how out of touch ACC is with it’s client base.

      I really hope that this is the catalyst for positive changes within ACC; but, I’m not holding my breath.

      Take care,
      CG

  6. CG, I’m sorry you’re having to go through this. It definitely isn’t fair. And, reading your last comment, how does that woman know what you would deem as serious?! Maybe I wouldn’t want it known that I was sensitive claimant at all! So even my name being sent out accidentally to some random person would be serious to me. Easy for her to say it’s not serious… it obviously wasn’t her sensitive information that was sent out. I wish I could give some sage advice about how to handle this situation, but I’m afraid I’d just be mad. Thinking of you. Take care, rl

  7. I am a long term ACC claiment with a chronic pain problem and have been battling with ACC for over 10 years, but this is not about me.
    My partner was recently assulted at work, her case manager mucked around for over 6 weeks before my partner organised her own trauma councelling. She has completed 3 sessions and now ACC says she must now return to work because she has a pre existing mental injury from a sensitive claim and they will no longer fund anymore sessions, they havent even seen the report yet. They are nothing but a joke.

    • Hi catman,

      I’m sorry for your, and your partners, struggles. Is your partners workplace offering any assistance? As the assault happened at work, it should be considered an OSH issue, and they may have systems in place to support your partner outside of ACC (e.g. EAP).

      I also suggest that you contact an ACC advocate, and ask for help in appealing the decision.

      Wishing you both the best,
      CG

      • Hi castor,

        Thanks for your reply. Unfortunatley now that ACC have signed up employers to lower levies if they have less accident days they are more interested in when you are going back to work and not are you better. She works for a large DHB, yes they have an EAF scheme but it is useless, very much like the management. You are right it should be an OSH issue, and one day it will be, we just have to wait for the right time. You see the problem is there is a bigger issue involved where she works. There are continual breaches of the HDC code and also human rights violations against at least one client she cares for, they all have intellectual disabilities but they all love her to bits, even the guy who hurt her. Some very interesting stuff your writing her.

        take care
        catman

    • Hi Lothlorien,

      It’s good to see you 🙂

      As each new revelation in this story is released, it’s becoming clear that ACC has some serious issues within the department. I’m still doubtful that they will be addressed.

      Thanks for dropping by, and commenting…

      Take care,
      CG

  8. Pingback: Purple Death | Scattered pieces

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