On #AncientAbledProverbs, Person-Centered Language and More

Social media continues to be an amazing place for thought provoking material. In the past I have blogged about #WhyWeDontEngage. This hashtag challenged me to think about how as mental health professionals we are of too quick to label people as “not engaging in treatment”. How we as professionals define “engagement in treatment” is vastly different from how those who are receiving treatment.

I ran into a similar hashtag this weekend, it started for me with this tweet..

I was immediately impacted by how the language used diminished the meaning of a person with a disability. Ableism is defined as “ Discrimination and social prejudice against people with disabilities. Furthermore, Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled.” The language we use in society can make individuals with disabilities feel “less than”. It is not only the assumptions and stigma that hurt, it is also the assumption that they should somehow be “more able”.

I found lots of these tweets incredibly thought provoking…

Found out what  I learned via my @Medium Post 

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What is #JusticeForLB and Why It Matters…

On twitter I have been sharing a lot of #JusticeForLB tweets. It is story of a family in England who lost their son in a tragic manner. Why should this social worker interested in healthcare integration want to talk about what is happening in the UK? I stumble on a lot global news on twitter and this one really struck me.

On July 4, 2013 Connor Sporrowhawk (a.k.a Laughing Boy, LB) drowned in a bath tub in a residential setting for individuals with a learning disability. This was due to a seizure that staff knew existed. Since then the family and other advocates have been on search for answers, transparency, and mostly acknowledgement that this was avoidable. My blog post probably can’t really do this…well…justice. There have been almost 3 years worth of blog posts and tweets chronicling the lack of transparency. Please take 15 minutes of your time to watch this video that describes the story in more detail…

I was moved to start this post after the family and advocates finally got to meet with administrators and the board from Southern Health (the system of care responsible for his care at the time). I think they were looking for just one thing. Someone to say they are responsible for his death. (admittedly this post has been sitting here for a while as this happened a few months ago now)

This narrative has resonated with me as a professional who is interested in integrated care. His placement was based on his developmental disability but he also had the co-diagnosis of a seizure disorder. We the tendency to place these issues in their own silo’s. Often when talking about developmental or behavioral problems, physical diagnosis often fades in to the background. His mom makes a wonderful plea to knock down these silo’s in the above video.

The family attempted to put his seizure disorder in the forefront. For whatever reason it was ignored. The order to care for his seizure disorder was cast aside. Why was he not cared for adequately? What happened with the information about his seizure disorder? The bottom line of this tragedy is that the facility ignored the whole person. They decided to treat one aspect of his care but ignored the most important part.

I read a lot about “medical errors” (botched surgeries, medication errors etc) I know little about these and how to remedy them. This was a care management error, which I do know something about. We need to listen to family’s, take physical diagnosis seriously in both developmental and mental health settings. As you watch this story please think about the importance of treating the whole person.

The other layer of this is the lack of transparency on the part of the agencies that care for him. I don’t pretend to know the politics of over there but what I do know about is being a human being. I do wonder about the global attitude of administrators when things like this happen. Three years have past with little or no acknowledgement of error. So back to the family meeting with board responsible for his care. What struck me that day (now looking at it is January 11. 2016) was this tweet about playing bingo about the words being said by the board…

When talking about accountability, administrators often hide behind buzzwords. What the family and advocates wanted more was just a “Sorry” (for a whopping 10 points). After more than three plus years of fighting, I don’t think they got it.  As I am writing this I am fairly certain they have not received it yet.

I am not in quality assurance nor an administrator. Since I have been following this case since the summer I have wondered, what do we risk by not being transparent about errors like this?  I guess if you acknowledge error (at least in the U.S) you are open to law suits. I think this is a sad commentary. That we are so litigious in this society that acknowledging error to improve care could be a problem.

To me the only thing that can happen is improving the quality of care so a tragedy like this does not happen again. That is at best my aim of this blog post. Let’s listen to families and respect their knowledge of their child. Then taking it a step further, to think about the aftermath for families looking for answers. I am going to end this with a rather cliche’ but important question. If you are a healthcare administrator and Connor was your child, how would you want this story to end?

 

 

 

Tools for Practice Tuesday- Vectors of Autism (a documentary)

Tools for Practice Tuesday- Vectors of Autism (a documentary)

Thanks to Leah Kelly (also found on WordPress) for pointing me in the direction of this great 40 minute documentary. This is a first person account of Laura Nagle , an adult with an Autism Spectrum Diagnosis. Laura bravely describes her experiences and eloquently provides psycho-education about Autism. This is a great resource for advocates, families, clinicians, and consumers.

Similar to my last post about #BoycottAutismSpeaks, this documentary changed my way of thinking about autism. The focus is on a strengths based assessment that focuses how people are “neuro-diverse.” Rather than “healing”  or “curing”, there is a need for adaptation and support. As a mental health provider, I sometimes get stuck on looking for the magic bullet. Laura Nagle points out the need for no magic bullet; just listen, support, and make changes as needed.   Please take the time to watch this documentary, it is time well spent.