ASAN and the IACC


On Monday, I went through an ASAN petition to the CDC that appears to have been intentionally hyperbolic and meant to get supporters foaming at the mouth. Since I posted the piece, I've continued to look into the ICD-9-CM, IACC's take on wandering, and when it was first mentioned at the IACC, of which Ari Ne'eman is a committee member.

This morning, Wendy Fournier commented at the article on Science 2.0, providing information that placed when Ari Ne'eman would have been first informed of the CDC's interest in wandering:

"This request from CDC stems from a presentation by the National Autism Association given to the Interagency Autism Coordinating Committee at NIH. Wandering and drowning are among the leading causes of death for individuals with autism and we must do everything we can do address these preventable tragedies. Just 3 weeks ago, 2 children with autism died on the same weekend. They were 3 and 7 years old. A medical diagnosis code will establish the need for education and resources for caregivers, doctors and first responders. Non-verbal children are especially challenging to locate when they've gone missing, and too many have suffered horrific deaths. 

The IACC - of which Ari is a member - was notified of this dx code request weeks ago. His arguments for self-determination are unfounded and prove that he has no understanding of individuals who are severely affected by autism - and no desire to protect them from harm. People with autism, like Ari, would certainly not be given this diagnosis. He is able to communicate eloquently with others, he can ask for help when needed, he understands potential danger, he does not need 24/7 supervision to keep him safe from injury or death. As a member of IACC, his responsibility is to represent ALL on the spectrum - especially those who are most vulnerable. Fighting this effort to keep our loved ones safe is a callous and heartless move.*
We have protection in place for the elderly suffering from Dementia who wander. There is an existing diagnostic code, there are Silver Alert emergency broadcasts systems to help find them when they go missing, there are millions of dollars provided by the DoJ for resources to protect the elderly from wandering. Would you let Grandma wander into a dangerous situation for fear of restricting her "self-determination"? No. Our children deserve at least the same protection.
For caregivers in need of information and resources to help keep your children safe, visit http://www.awaare.org. 
Wendy FournierPresidentNational Autism Association"

While I have issues with the NAA's positions on vaccines, biomedical treatments, and its general endorsement of woo and would not go so far as to address Ne'eman's fitness to sit on the National Council of Disabilities or the IACC, the fact that he was aware of the situation but waited until Monday, March 14th, to put out the petition makes me wonder why he waited until after the meeting had occurred, when he knew it was going to occur months before? According to the IACC transcripts, wandering was addressed in October (Ne'eman there). It was addressed in November (Ne'eman not there). And again in January (Ne'eman there).

From the January 12th transcript:

"Ms. Singer: Okay. Let's move on to Action Item 2. As I mentioned this was one where there were some differences of opinion among the subcommittee chairs and this one has to do with creating a medical subclassification coding or general medical coding for ASD wandering and similar neurological disorders. Such a medical coding could be used to collect data on ASD-related wandering and could also help validate insurance coverage for tracking devices and related expenses to help families. So Sharon, do you want to talk about - do you want to maybe -

Ms. Lewis: Sure. So, a couple of things. I think that first and foremost, you know, CDC has made the decision to bring this before the committee that works on the ICD coding issues and it will be discussed at the beginning of March and will be - there will be opportunity for public comment and input on this particular issue. And I think that that is the appropriate forum for that conversation to take place, and just wonder if this is something that we need to suggest to the Secretary at all given the fact that CDC has already taken action on it. So that's my first comment.

And then secondly kind of contextually, as I did outreach with the University Center and others on kind of the state of play in this conversation I heard very mixed concerns from folks around - is this premature in terms of what would then be the recommended quote/unquote “treatment protocol” if someone was given a secondary diagnosis of wandering-related, you know, ASD-related wandering and what would the basis for that diagnosis be. And so again, as someone who is not a medical researcher and I depend upon the expertise out in the field I have questions about making this recommendation in this way and essentially endorsing a particular protocol, i.e., tracking devices as something that should be covered under, you know, a medical payment. So those were my two questions and concerns that I wanted to hear further discussion from the committee on. "

The IACC meetings are public meetings, so there was no secrecy being enforced on Ne'eman. Why did he wait several months to start the petition? Why not rally the troops two months ago, and why not register to be there if this was going to lead to "label[ing] hundreds of thousands of children with "wandering" diagnoses that would make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment"?

ICD-9-CM

What is the ICD-9-CM and would a code of wandering in it suddenly mean hundreds of thousands of autistic individuals would be labeled wanderers and slapped into restraints as the petition insists? According to theAmerican College of Emergency Physicians, 

"ICD-9-CM (International Classification of Diseases, 9th edition, Clinical Modifications) is a set of codes used by physicians, hospitals, and allied health workers to indicate diagnosis for all patient encounters. The ICD-9-CM is the HIPAA transaction code set for diagnosis coding." In addition, "The current edition in the United States for morbidity classification, ICD-9-CM, has been in use since 1979. The original intent for the diagnosis codes was for epidemiological and not billing functions, although in the US, the codes are used by payers for billing and reimbursement purposes." (blue bolding mine)

Now, what was it the IACC wanted the diagnostic coding for again? Oh, that's right: to begin to count; to see how big a problem this really is.

The possible addition of wandering as a diagnostic topic was covered in a letter from the Interagency Autism Coordinating Committee (IACC): 

"Investigate the use of a medical subclassification coding or general medical coding for ASD wandering, similar to the existing coding for dementia-related wandering that would be specific for children with ASD. Such a medical coding could be used to collect data on ASD-related wandering, establish the need for support and assistance for families affected, and help validate insurance coverage for personal locating devices and related expenses for families who are currently unable to afford them. The Centers for Disease Control and Prevention (CDC) has already submitted a proposal for an ICD-9-CM secondary diagnostic code for “wandering in conditions classified elsewhere” (e.g., autism, mental  retardation/intellectual disability, certain genetic disorders). The proposal will be considered by the ICD-9-CM Coordination and Maintenance Committee at its meeting in early March, 2011." (bolding mine)

It should be noted that in the paragraph that proceeded the above quote, the anecdotal nature concerning wandering and autism is a problem and study is needed: 

"While the autism advocacy community reports widespread and serious issues related to wandering based on anecdotes and informal data collection, it is difficult based on this information to ascertain the scale and scope of the problem. More formally and extensively gathered data will be imperative to understand how many individuals may be at risk, the settings and circumstances involved, antecedent behaviors, potential causes, effective preventative supports and interventions, and how often these incidents are reported to the authorities."

More importantly, in the next to the last paragraph of the letter is how wandering ought to be addressed: 

"Develop and test programs to prevent wandering incidents. HHS and the Department of Education should work closely with national medical, education and disability organizations to develop preventative information about autism-related wandering to be communicated to parents at the time of autism diagnosis. Preventative programs could include parent training, training for children with autism, teacher training, and first responder training. Currently, there is no federal funding to provide training or support to prevent autism-specific wandering. By comparison, the Department of Justice contributes over $1M annually for first responder training on Alzheimer’s-related wandering and tracking technology."

No restraint of any kind discussed here.

Perhaps just as important as the lack of a mention of restraint in this letter is how the coding of wandering as related to dementia is currently handled. The Department of Human Health and Services Restraint Reduction manual addressed how to handle wandering, starting on page 55. Nowhere in the section on wandering does it ever advise to use restraint. In fact, there are several pages of possible ways in which to redirect the individual in a way that respects the person's autonomy.

The CDC provides guidelines for the use of the ICD-9-CM:

 "These guidelines are a set of rules that have been developed to accompany and complement the official conventions and instructions provided within the ICD-9-CM itself. The instructions and conventions of the classification take precedence over guidelines. These guidelines are based on the coding and sequencing instructions in Volumes I, II and III of ICD-9-CM, but provide additional instruction. Adherence to these guidelines when assigning ICD-9-CM diagnosis and procedure codes is required under the Health Insurance Portability and Accountability Act (HIPAA). The diagnosis codes (Volumes 1-2) have been adopted under HIPAA for all healthcare settings. Volume 3 procedure codes have been adopted for inpatient procedures reported by hospitals. A joint effort between the healthcare provider and the coder is essential to achieve complete and accurate documentation, code assignment, and reporting of diagnoses and procedures. These guidelines have been developed to assist both the healthcare provider and the coder in identifying those diagnoses and procedures that are to be reported. The importance of consistent, complete documentation in the medical record cannot be overemphasized. Without such documentation accurate coding cannot be achieved."

If the ICD-9-CM is used for medical coding and billing only, why would anyone believe the school districts would be able to jump in on this? Honestly? And how, when medical records aren't provided to schools?

What about the dementia patients that live at home and haven't wandered yet? Have hundreds of thousands of them been rounded up, labeled and restrained? I don't think so. I think the existing code for wandering under dementia allows hospitals and residential facilities to code the medical records. Certainly, the policies for preventing wandering, as mentioned above, do not mention one single word about restraints. So why the hyperbole and the push to get supporters to believe that people with autism who are living independently would all of a sudden be at risk for being labelled by a medical code and rounded up? 

And if you think that's not what supporters believe, I suggest you read the comments on the petition website: "Both my sister-in-law and my sensei (at my Aikido dojo) are autistic, and this code could allow them to be imprisoned against their will."

The comments at the petition site reflect a knee jerk reaction. One believes it will lead to people with Alzheimer's being labeled with wandering, which they already are, if they do.

Most people won't take the time to dig. They certainly won't spend a significant portion of three days trying to get to the bottom of it, to make as informed a decision as possible. No, instead, they'll read the inflammatory rhetoric and accept it as true. They will then go to even more extreme absurds (again read the comments thinking a wandering code will lead to torture) and they will share that with other people.

Wandering

There are no returns for journal articles or research in the scholarly database on wandering and ASDs. Other than the NAA 2007 survey showing that "92% of parent respondents said their children with autism have a tendency to wander," there's no good estimate for how many children and adults with autism wander, elope, or otherwise engage in escape behaviors that put them in danger. 

While the research on wandering isn't even in its infancy stages in ASDs, there is extensive research on wandering in dementia patients and in individuals with cognitive disabilities. It is possible to get definitions on wandering, so that people don't make the unfortunate choice of making themselves look silly by writing  "The desire to go for a walk is not a pathology." To believe that wandering is a person going for a walk is uninformed at best.


Wigg (2010) explores wandering in dementia patients and the need to reexamine how institutions manage patients with dementia who wander, arguing that technology allows for a wider range of management practices that increase the dementia patients' autonomy: 

"Research identifies wandering as a behavioural problem often requiring institutionalised interventions, such as pharmacological restraints (Oxman and Santulli 2003). Wandering is complex and ranges from exit seeking behaviour, including elopers and runaways (Lucerno 2002), to restless pacers and modellers (Oxman and Santulli 2003). Institutional and professional definitions of wandering (i.e. wandering as a behavioural problem or as an articulation of need) shapesthe interventions chosen. Exploring wandering behaviour from a clinical perspective identifies it as a behavioural problem requiring pharmacological and⁄ or behavioural interventions."

Note Wigg's use of "behavioural problem" rather than pathological condition, as well as the range of potential reasons for engaging in the behavior. This, in no way, implies a person going for a walk. To believe that children and adults with severe autism who wander away from their homes and into dangerous situations like traffic or into the woods are simply exercising their right to engage in autonomous behavior is simply "taking a walk" is beyond the pale and reflects an incredibly inadequate grasp of the problem some autistic individuals have. I can't be more specific than some because there is no data on wandering in ASD. The ICD-9-CM code for wandering under an ASD diagnosis would allow for the deliberate, careful, and precise collection of data on this problem. It would allow us to ascertain whether this is a limited problem involving only a minority of autistic individuals, whether it was self-limiting, what interventions worked. It would be the beginning of data collection, the beginning of being able to make an informed, rational decision. It would not be the pathologizing of taking a walk. My oldest takes a walk; he's cognizant of where he is going, what he is doing, and the potential dangers he should be looking out for. There was a time this was not the case, but that is no longer true. 

Tentative Conclusions

Research into wandering and ASDs is not even in its beginning stages. We have no idea how big an issue this is, but the isolated instances of deaths of autistic young people from wandering provides a clarion call to action, to see how pervasive this is, to be able to measure whether it's a greater problem in autistic children than in the general population. Where wandering is a problem, positive behavioral support programs, preventative measures, and the use of technologies to quickly locate these children is a must. The Amber Alert system does not cover a child wandering away; something else is needed for prompt action.

Knee jerk reactions and fostering fear in the autism community that"Labeling hundreds of thousands of children with a "wandering" diagnosis will increase restraint and seclusion in schools" is impractical and inappropriate at best. It does nothing to foster informed decision making. It does nothing to call for data collection, and it absolutely does nothing to protect the most vulnerable from very real dangers. All three of my kids were runners; when Bobby was in first grade and we lived in Germany on a busy street, he slipped from my grasp and attempted to dart out into traffic. His father's quick reaction saved my son's life. 

For parents of children who dart, who run, who wander, having a clear idea of what prompts these behaviors and how to prevent them is vitally important. For those parents who have already paid the ultimate price and lost their precious children to the dangers that lurk for children who wander and can't effectively communicate or navigate, research will be at best a cold comfort, but at least they could take some comfort in knowing other children won't suffer the same fate.

 References