On March 14, I became aware of the CDC’s consideration of adding a wandering code to the ICD-9-CM in relation to autism and other developmental disabilities. ASAN, an organization created and headed by Ari Ne’eman, created a petition calling for people to speak out against the wandering code. I deconstructed the petition and began to investigate the likelihood of a wandering code doing what ASAN insisted it would: “hundreds of thousands of children" would get this diagnosis, nor that "school districts and residential facilities" would stick these labels on individuals in order to "justify restraint and seclusion in the name of treatment." 

 I followed up on this post two days later, examining how the issue of wandering was brought up at the IACC, what the ICD-9-CM was about, and what is known about wandering from the dementia angle. What I discovered, in the pursuit of understanding this topic, was that the claims being made in the ASAN petition were hyperbolic.

 On March 28, I posted a third article examining the semantics of the wandering code and the real risks that wandering poses. The CDC had posted the summary of the March 9-10 meeting and provided the link and the discussion of wandering the committee had, showing that committee members were concerned about who the code was meant to apply to.

 On April 4, Alison Singer and I were interviewed on Autism Women’s Network regarding our support of the wandering code.

 Yesterday, I received answers from the CDC to questions I had sent in relation to the wandering code.

 What follows are my questions (and afterwards, the CDC's answers as I received them, with a link to the document from the CDC that I uploaded to google documents).

Question 1:
Many advocates in the community are worried about the possible negative consequences to a code; they fear, according to the petition by ASAN, that hundreds of thousands of autistics in the US would receive that code and be at risk of restraint. What assurances can the CDC offer that this code, if implemented, would not suddenly apply to all individuals with an autism diagnosis? How would the code be implemented?

Question 2: 
The second misconception appears to be related to the strength of the diagnostic code and the belief that it would carry the weight of a DSM-IV diagnosis, which from what I can tell, is far from the case. Everything I've discovered in relation to the currently existing code for wandering behavior and dementia ( ICD-9-CM Code 294.11) would seem to indicate that it does not, in fact, carry that degree of importance; it's more a descriptive code. Is this a correct reading of this code and how it would be used?

 Question 3:

Those in favor of the code feel this would help to get the supports, the technology and the appropriate interventions to safeguard against wandering, as well as providing the ability to begin to get an accurate count for the percentage of autistic individuals who wander. Is this an accurate assessment?

 Question 4:

Would wandering be defined explicity so that care providers would know when the code is applicable?

 Question 5:

Would any procedure codes be linked to the diagnostic code? What role would the code play in making sure that restraint was not the first choice for prevention in wandering?

 Question 6:

What information regarding the code does the CDC feel that caregivers and autistic individuals do not have readily at hand when trying to determine the wisdom in having a wandering code that can be attached to the autism diagnosis?

The CDC's response:

ICD-9-CM: wandering code proposal

"The International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) is a system used in health care settings throughout the United States. The ICD-9-CM classifies diseases, disorders, and syndromes, as well as a wide variety of signs and symptoms, including behaviors and risk factors. It is jointly maintained by the National Center for Health Statistics of the Centers for Disease Control and Prevention (CDC) and the Centers for Medicare and Medicaid Services. [http://www.cdc.gov/nchs/icd/icd9cm.htm]
 
The Interagency Autism Coordinating Committee (IACC) [http://iacc.hhs.gov/] is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism spectrum disorder (ASD). The IACC heard tragic stories of children dying from drowning and other injuries due to disability-related wandering. Although not all individuals with an ASD or a developmental disability exhibit high risk for injuries, harm, or death related to wandering, the challenges in safety awareness associated with these conditions are a significant concern for some individuals.
 
There is little data available about wandering associated with conditions such as autism and other developmental disabilities. Wandering, as a concept, is already included in the International Classification of Diseases. There are wandering codes associated with Alzheimer’s and vascular dementia, so the classification already accommodates this concept. CDC’s National Center on Birth Defects and Developmental Disabilities developed a wandering code proposal as one way to collect better data on wandering.
 
The proposed code is intended for use with any condition classified elsewhere in the ICD—not specifically for autism and other developmental disabilities. This code is intended to capture information about individuals, with any condition classified in the ICD, who wander.
 
The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering. There is little data on this issue and information about these issues is largely anecdotal. The concern is to recognize that there are individuals who, at times in their lives, may need additional services and supports to keep them safe. Anyone in this situation should be part of the decisions on how to keep them safe and priority should be given to working with the person to teach safety and independence skills so they are no longer at risk for dangerous wandering.
 
Better data should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand the wandering and develop proper emergency protocols and response while supporting self-determination principles.
 
The proposal was submitted as a part of the regular schedule for review by the ICD-9-CM Coordination and Maintenance Committee. The proposal was submitted at this time because this was the final opportunity for additions/revisions to the ICD-9-CM until 2014. [http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm]
 
The comments on the proposal will undergo review by the ICD-CM Coordination and Maintenance Committee. If there is support for the code to be approved, it could be implemented as early as October. The ICD-CM Coordination and Maintenance Committee will take the information received during the comment period to determine if there are clarifications needed to make the intended uses as clear as possible.
 
CDC is aware of the divergent views on the utility and potential unintended consequences of including a code for wandering associated with conditions coded elsewhere. It is very clear that concerns both in favor of the code and against the code are focused on ensuring the safety of people with an ASD. However, the safety concerns raised by each group are different and the opinions on the benefits and risk for having an ICD code vary greatly. The ICD Coordination and Maintenance Committee will take comments about the benefits and risks of the code into consideration."

The weight of the evidence suggests that there is no reason to believe that the code will be used to suddenly label autistic individuals with a wandering code, nor is there reason to believe it will lead to restraint. 

The reality is that restraint and abuse is a real problem here and now, as is wandering. We need better training, better information, and better choices for caregivers to respond to behavioral issues that put both the individual and the people around them in danger. Restraint should always be the last option and when restraint is used there should be safeguards to protect both the individual and those using the restraints. Accountability is vitally important; justification for the use of restraints must be shown each and every time they are used.

The wandering code in and of itself will solve neither problem, but it might lead to hard information on wandering, how often it occurs, in how many individuals it occurs and the reasons for why it occurs. From there, better interventions can be created and better training implemented.

Sensationalizing this issue will not lead to anything productive, nor will it lead to people becoming better informed on the situation. Action without information is unwise and will not help our most vulnerable.

My thanks to the individuals at the CDC who worked on these responses and to Alison Singer for helping me connect with the right person.