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Wandering Code Examined: Semantics and Emotions In The Midst of Tragedy

March 28, 2011

“Despite reports of concern from caregivers and some studies, there are limited data on  population-based estimates and predictors of risk for wandering associated with ASD/DD.” —ICD-9-CM Coordination and Maintenance Committee Meeting 

Wandering is a real issue with real, present-day ramifications. While it’s important to not dive into knee-jerk reactions every time the news provides us with another example of wandering incidents and deaths, it does put a real face on the issue. It isn’t some hypothetical what-if; parents and caregivers are dealing with it right now.

Because there is no research in wandering related to ASDs, in order to understand the ramification of the wandering code attached to ASD diagnoses, it is important to look at the research and information available on wandering in dementia patients, since the wandering code will mirror the already existing wandering code. In the CDC’s March 2011 meeting agenda, wandering is discussed in relation to the already existing code for wandering: 

Currently there are no unique codes to capture wandering associated with ASDs, DDs, or other conditions such as Alzheimer’s disease.  The concept of wandering was added to ICD-9-CM effective with the October 1, 2000 update as an inclusion term under at code 294.11, Dementia in conditions classified elsewhere with behavioral disturbance.   CDC (National Center on Birth Defects and Developmental Disabilities) has requested that new codes be created to better identify children and adults that wander associated with ASDs, DDs, and other conditions.  The additional code would not be a component of the ASD or other DD diagnoses, but could be used in conjunction with other applicable codes.”

The research on wandering in dementia patients, while far greater than the non-existent research on wandering in ASD individuals, is still in its relative infancy. However, what has been studied is the use of physical restraints in dementia patients who wander. In 2006, the Alzheimer’s Association released the report “Falls, Wandering, and Physical Restraints:  Interventions for Residents with Dementia in Assisted Living and Nursing Homes.” Tilly and Reed looked at the existing research literature on falls, wandering, and restraints in patients with dementia living in residential care facilities and they concluded that physical restraints are inappropriate and ineffective. They write:

“Rather, residential care facilities need to assess the individual needs and abilities of their residents and devise individually-tailored, creative strategies to address these issues.  In addition, there are many health and functional problems associated with physically restraining residents, while no benefit is proven. Further research is urgently needed in the area of wandering, given the limited number of intervention studies with control conditions that are available from peer-reviewed sources.”

 One of the arguments that ASAN’s petition makes is that the wandering code “promises to label 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.” While it’s apparent that restraints do happen, it is pretty clear from the Department of Human Health and Services that restraint use is not the intervention of choice in wandering.

In addition, in reading the various comments on the petition site and other websites dealing with the issue, it becomes clear that there is tremendous confusion in the community on what wandering behavior is. Some individuals seem to think wandering is simply moving about and that nothing should be done to hamper an individual’s freedom of movement. They rush to the judgment that care providers would use a variety of restraining measures to impede the freedom of movement. Obviously, our children’s behaviors and their appropriateness are dictated by the environment and the situation. In a classroom where sitting at a desk is expected, then getting up and moving about the room will not be considered appropriate behavior. There are other, more appropriate ways to deal with this than restraining a child; if that happens, that’s a failure of the adult in charge. Indeed, the focus in this particular camp is that the movement is purposeful and communicative and therefore not to be interfered with.

I’m pretty sure that’s not the kind of behavior being targeted by a wandering code; there’s a tremendous difference between physical movement that endangers no one and wandering behavior that puts individuals at risk of harm and death. Looked at from the perspectives of caregivers, wandering behavior has to do with the individual who leaves the home or the room without warning and wanders into traffic or into the woods. Clearly there is a difference between being tired of sitting and getting up and moving around and walking out of a safe, supervised environment and into a potentially dangerous situation, especially for a child or person who has 
difficulty attending to the various stimuli presented.

Recently an 11-year-old autistic girl wandered away from her school playground and walked more than 100 blocks in New York City. That’s wandering behavior and it’s dangerous, and the school officials knew because of a prior incident the month before that she was at risk for doing it again. A code, along with guidelines for how to handle wandering behavior, coupled with training for the school faculty and staff might have prevented this unfortunate situation.

Today Monroe News reports that a 4-year-old boy with autism wandered off from his backyard yesterday and drowned in the nearby river.

Clearly instances like these are ones we all can agree should be prevented. Are they lapses on the caregivers’ parts? People will certainly have their own strong opinions about this, but the reality is that we can do everything right, be proactive as parents and caregivers, and still have a child get out of our sight or our grasp, and tragedy can occur.Working to prevent these instances is an important goal for parents and caregivers. Working to prevent abuse through the use of unnecessary restraints should be important to everyone.

What remains unclear is how big a problem this is in general, how many instances of wandering occur that are never reported on in the news, and how a wandering code would help in this matter.

While being concerned about the potential ramifications of policies is reasonable, we need to focus on present day realities and how to resolve those issues currently facing us, and that begins with data collection. If the wandering code allows for the large scale study of medical records for the collection of epidemiological information related to wandering behavior and ASDs while also allowing for parents to receive training and resources relating to the prevention of dangerous wandering behavior, then the code is a good thing. Concern regarding the use of restraints needs to be fought in relation to real-world, present-day situations. Mandatory training on the appropriate way to redirect those individuals who wander without physically restraining should be called for, and even more importantly, training programs should be funded.

I see no reason why both concerns, the concern for a code that will help measure the magnitude of the problem while allocating resources for parents and institutions and the concern that individuals not be physically abused, cannot be addressed at the same time.

The summary of the March 9-10 meeting of the ICD-9-CM Coordination and Maintenance Committee Meeting  includes the following about wandering:

Favorable comments for option 1 included that it is more specific to the problem described.  If the intent is to assign a code for wandering, in addition to the underlying cause, it was recommended to add a use additional code note at the codes for the underlying disorders.    It was also recommended to add a use additional code note at code 294.11, Dementia in conditions classified elsewhere with behavioral disturbance since wandering is listed as an inclusion term at that code.    Dr. Linzer, AAP, stated a preference for option 2 and likens it to patients with a fall risk who need extra health resources for monitoring.  He said he prefers locating the code in subcategory V49.8, perhaps at V49.80, although he said that the proposed V40.3 is OK.  He also suggested including the terms Alzheimer’s disease, dementia, and developmental delay in the code first list.  The question was raised as to whether this code would apply to children who wander away from home, for example early in the morning before parents are up; it was suggested that was not the intent, so for such cases there should be a note to omit code.  
Another question was whether this code would apply to patients who escape from a lock down mental health unit. A question was also raised as to whether this code would apply for drug abuse, or whether that should be excluded; the issue should be considered.  It was indicated that these examples were not included in the intent of the code as proposed by the requestor.”

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