Risk: “Catastrophic.” The foreseeable death of Julian Stacey.

The mother of Julian Stacey wants lessons to be learnt from the loss of her son. It is with that desire in mind – and the deepest sympathy and respect for the family – that I write this post.

In order to get as complete a picture as I could of what happened in this case, I have read the original decision as well as listened to radio interviews and read numerous news reports. What follows is my summary, and views, of this tragedy.

In 2010, an 11-year-old autistic boy escaped from a respite facility here in Auckland, the facility is called “Spectrum Care.” The boy had the cognitive functioning of a one to two-year old child. He was found, drowned, in a near-by duck pond.

A decision released last week by the Deputy Health and Disabilities Commissioner, found that Spectrum Care had failed in its duties to this child. Julian had been attending the centre since 2006. He had previously successfully escaped from the facility; not once, not twice…: “In 2008 he escaped four times, and then twice in 2009.” (In 2009 he’d attempted escape three times, but was only successful twice. Another report I accessed said he’d attempted to escape five times in 2008 and succeeded twice, so there is apparently some discrepancy in the reporting here, but the point is the same.)

The facility knew clearly and first-hand the risk of escape, labeling the risk as “catastrophic” in their crisis plan, and noting that the child had no road safety sense and was vulnerable to strangers should he escape again. They also knew he was drawn to water, and had noted that the duck pond which was 250 metres away, should be checked first if he’d wandered off.

With them knowing his history of escape first hand, and knowing the multiple and serious risks to his safety in the likelihood of escape, it is shocking to me that this facility – a facility’s whose job it was to keep the child safe in the care of trained and paid employees – failed in this way.

The factors that came together to lead to this outcome, were not seen as fatal by themselves. But in combination, they were deadly. They include the presence of two very new staff members (each with only a month’s experience), among the poor staff ratios at the time (poor staff ratios caused by delayed parent pick-ups that day). Also, crucially, there was a back gate that hadn’t been physically checked for being locked. A gate that could be opened from the outside (apparently intentionally so as to allow emergency access). There was a history of children who played in the park nearby, coming in via the back gate to retrieve lost balls. The focus of trying to make sure Julian didn’t escape was on the front door, but it was through one of these back gates that he ultimately last escaped. (For a summary of the key factors leading to the escape, see paragraph 154 of the decision; all links are provided at the end of this post.)

Since the incident, Spectrum Care has made more safety changes, including a buzzer system to alert staff to doors being opened, which – it must be noted – the mother had actually suggested prior to the death, but that Spectrum Care had considered “un-necessary” at the time. They have also adjusted their staff hand-over process, to make sure the children are kept in sight during hand-overs and that hand-overs are as quick as possible.

The official findings are somewhat critical of Spectrum Care’s attitude and perspective of what happened (see for example paragraphs 118-120, 126, 135-137, 147, and 150. A few specific examples: the Deputy Health and Disabilities Commissioner did not agree that the gate had to be able to be opened from the outside for emergency services, did not think there was adequate reason to focus so much on the front door as the primary point of escape, and did not think the staff had adequately supervised Julian considering his high risks). Spectrum Care also claimed the incident was a result in part of resourcing issues (para 151). The decision did not support this claim.

Spectrum Care has apologized, but only in this past week; two years after Julian’s death. Quite rightly, the mother says the apology is too little, too late, and that an apology earlier would have helped the family to move on. They still struggle with the loss.

When the mother – Natasha Stacey – first got the news of her son’s death, she fell to the ground and screamed. I can’t read the stories of what she went through, of how she reacted, without getting tears in my eyes. Her story is the nightmare of so many families of autistic children, but she has lived that nightmare, and yes we must take whatever lessons we can from this.

Drownings are apparently the leading cause of death for autistic children (and autistic adults), and not just for those with intellectual disability and epilepsy. Where possible, we must teach our children water safety, though that is frequently an extremely challenging proposition with our children (I know it is with my own son). Where the skills are lacking (and even when they’re present) we must let carers of our children know about the higher danger of drowning for our autistic children.

We have the right to insist on adequate staffing and facilities for our children, and where they are not adequate or we do not think we are being listened to, we keep fighting; it is not just our own children who are at risk: Poor safety practices and procedures can impact on all children in that organisations or individual’s care. So don’t tell yourself you’re being a nuisance, or let them make you feel you are being over-protective; when it comes to wandering and drowning, it is a matter of life and death.

My heart and my sincerest best wishes go to the Stacey family. I want them to know that Julian’s death is not just another news story, that his story has been heard. That it touched me and many others, and we will try to learn from it too. And that I, for one, agree with the mother’s view that the staff should have lost their jobs, or at least have been stood down during the investigation, and that Spectrum Care got off lightly for what has happened. The death of a child, especially such a seemingly avoidable death as this, screams for justice, a justice that does not appear to have been done.

***

Links to resources used in the research for this post:

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14 Responses to Risk: “Catastrophic.” The foreseeable death of Julian Stacey.

  1. Angela says:

    My heart bleeds for this family-Julian was at my boy’s school. I showed him the photo in the paper the other day and he said to me “Julian drowned, he is dead, he got wet, the ladies didn’t watch him.” I don’t think justice is EVER done for our special precious vulnerable children .Aroha to the Stacey family and RIP Julian-you deserved better care than you received from this agency who were entrusted (and paid for) your care. This is so sad and shouldn’t have happened.

    • Tarsha says:

      I thank you for your comments Angela. I hope your son is doing ok at school, I miss seeing all of the children at school. They are so vulnerable. I hope that this is a lesson to all that they need more care than ever. It is so sad that even our special children know what is happening simple words like wet, and didn’t watch him that is tragic on how an autistic child can identify with the death of Julian. He will always be a part of everyone’s lives.

  2. nzpam says:

    This is so sad and frustrating. I agree, Spectrum Care got off too lightly!

  3. nostromo says:

    When I first read about this in the news and about the sticky gate I thought, but for the want of some WD40 and maybe some adjustment with a spanner there goes someones loved one, and then I pictured in my mind a better solution for a place like that; the classic two gate system with a ‘pen’ or contained space in between. It means that if any one gate is open there isn’t actually a path to the outside.

    But I also wondered if Julian had had early intervention and appropriate therapy would he still be functioning at the level of a “one to two year old”?
    I suspect my son is similar, he is nearing six, is not toilet trained, is non verbal, by which he could be assessed as functioning at a 1yr old or less (he has a functional assessment from last year where some skills were about 3 months old level) heres a video I took of him on the weekend.

    The use of a mouse was taught using ABA, as was how to match things (using physical cards) as its not intuitive for my son. Same for PECS, same for sitting still on a chair.

    Maybe without the teaching he has had he would be in a similar place as Julian at 11.
    OK thats just me wondering..and I don’t know Julians story, but aside from the tragedy of his death all of these stories of locked up Autistic people make me very sad, and I wish other young children would get all the help they need, so they would never end up locked away or floating face down in a duck pond.

    • Hi nostromo, just a few points:

      It wasn’t just a sticky gate sort of issue that lead to the tragedy, though the gates were problematic and have been fixed quite a few times over the years from what I’d read. For what it’s worth, they have introduced buzzers to alert that people are coming and going, and have addressed the problem with the gate being openable from the outside (which is likely to have been key in the tragedy). Of course, better supervision would have negated the whole gate issue one suspects, as would reducing the number of exit points from the back yard, which I believe has also been now addressed.

      Also, I don’t know that intervention and therapy would have made a difference in Julian’s case (I recognise that you’re not saying it definitely would have, and that you don’t know his details). From my own research, it’s a small percentage of autistic kids who manage to shift from very low to quite high functioning, and some of those appear to happen regardless of the interventions used. There are also those whose conditions are so extreme, and often combined with other conditions, that all the intervention in the world can’t seem to lift them past a certain level of functioning. But yes, for a large group in the middle of those two extremes, it does seem that the right types and intensities of intervention can make the world of difference. It’s just so hard to tell where a child falls in these various groups, so I try to not comment one way or the other on whether intervention would have really made a significant difference in individual cases like this. Not least of all because it can be very upsetting for the parent to hear someone say that they didn’t try hard enough, particularly if they actually poured every cent and moment into that child’s well-being and growth.

      One more important point. I get the impression (perhaps wrongly) from your comment that you think this respite facility was some sort of locked up institutional arrangement. It was (is) actually a residential type home to give parents breaks from full-on constant care of high needs kids, and clearly they weren’t locked up sufficiently for the child’s safety either. The children would be taken on outings together too by the facility, they weren’t just kept in the home the whole time. I’m yet to hear of any autistic children in New Zealand being locked up in facilities separate from their parents and schooling, perhaps it is happening and I am unaware of it? I am aware of special needs boarding schools, but I wouldn’t think of or rank those as institutional facilities, there are “normal” boarding schools across New Zealand too, it’s just one more educational option for a parent to choose from (though some of the facilities are apparently in the firing line right now because of funding issues from memory).

      I want to end on the most important thing about your comment: The video of your son. It was so special that you shared that, and you are right to be proud of him and what you have acheived through ABA for him. He is a beautiful little man too. Thank you for sharing 🙂

  4. Hilary Stace says:

    This is a very sad story and as a parent of an autistic son who has had some close calls safety-wise I am very sorry for the family. However, I also sympathise with the workers, who are probably also grieving badly. They were probably on the minimum wage and not very well trained yet had to look after children with very high and complex needs, who probably only brought respite resourcing of about $72 for 24 hours. This is not enough for one on one care, let along the higher ratios that many children require. I have volunteered on respite programmes and I know how determined some children are to escape however much attention they get and however much the environment is secured. This is a question of resourcing and training, and communication between respite provider and parent and I hope all have been addressed since.

    • Hi Hilary. Just to the point of resourcing, this was the claim the centre made too, and it was rejected by the person who ruled that the centre was at fault.

      Quote: “In response to my provisional opinion, Spectrum Care stated that their actions were reasonable, in light of the resource constraints under which respite services operate. In my view, the factors that led to this tragic event were not resource issues. Rather, they were failures to recognise the risks and ensure that adequate systems were in place, and complied with, in order to minimise the risks.”

      So whilst there may be resourcing issues that can cause issues, and whilst some people in the staff’s situation are just in a hard or impossible situation and doing their best, that does not seem to have been the case in this instance.

      I sympathise with your broader points to a degree, but Julian’s death was the result of a number of factors – many foreseeable and inadequately addressed despite knowing how extremely serious the risks were.

    • Angela says:

      Just a point re resourcing-the amount parents get paid for arranging respite care ie Carer Support is vastly different from the amount Spectrum would have been paid to care for Julian-$72 would translate into $250 for Spectrum.

  5. Nostromoswife says:

    I saw this story in the news too and as an autism mother it just broke my heart. Sometimes I wonder whether it’s safe to leave our boy with anyone – one slip of the hand and he’s on the road 😦 But it’s a catch 22 because if you don’t seek respite care, you run the risk of burning out and the family falling apart. Good respite care is critical to families being able to carry on, maybe go on holiday and god forbid, actually enjoy life. Stories like this stress me out because it feels like you have to choose between the need to protect and care for your extremely vulnerable son and the need for the rest of the family to have respite.

    • I very much understand your conflict. We had respite care suggested and offered to us, but I couldn’t get past my concerns about others not being able to understand his simplest efforts at communication, and the huge number of tiny things that would send him into meltdown. So we never accepted respite care, but we surely should have; our family unit suffered, my mental and physical well-being were severely affected at times by the constant stress and endless demands of a high needs child. Now that my son is high enough functioning that he communicates and every time thing doesn’t put him in a tail-spin, I’d feel better about respite, but he’s not severe enough to really need it anymore.

  6. Kelly Fritz says:

    I used to work for several companies and as an employee it is so frustrating that you want to give the clients the best services that you can but the your duties are two numerous and ratio two high and care goes down. My hope is that the administration stops looking at the bottom line and gives the employees what they need to do a good job.

    • nzpam says:

      Yes, this is a huge point! I wanted to say something but it still frustrates me so much i didn’t know where to start.
      I worked for 14years as a psychiatric support worker for adults and will never go back to it. The frustration as a support worker is huge and i’m sure Spectrum care is the same. The funding these places get is through govt, but too much of that funding is spent on managerial staff. The staff working with the clients are overworked, underpaid and not supported by management. I found the amount of paperwork (really butt-covering) grew to the point where most of my time was spent trying to keep up with that. My reason for doing the job was to help people and to learn, my reason for leaving forever was mis-management.
      This is a real problem issue with no clear answers. If i was looking for respite for my child, i’d look among home-based people rather than the large companies, and spend some time visiting with them to observe how they interacted with my child.

  7. Tania Hotu says:

    Julian Stacey was a great little kid. He was a mokopuna (Grandchild) of our’s and very special. I feel for our niece and all the heartache that has happened since Julian’s passing. We do not have an Autism child, but we have an special needs adult daughter. We don’t know the difference between either, but they are Special to us. Our hearts and thoughts will always be with you always Natasha…Love you always..Aunty Tarnz and Uncle Lionel

  8. Pingback: Drowning in Need: Autism and Swimming in New Zealand | Autism & Oughtisms

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