The CDC Response to Questions Regarding the Wandering Code

(Note: I have strep and am really not feeling well, but didn't want folks to wait. My apologies for the editing and any errors that have creeped through.)

Last week, through some assistance from Alison Singer, I was able to connect with the CDC and ask several questions relating to the ICD-9-CM code relating to wandering.

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."

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. I have not added commentary relating to this response at this point; my hope is that individuals who are concerned regarding the wandering code will read this with an open mind and make up their own minds. I will, though, revisit this in the future, incorporating the response into a general assessment. Thank you.


melbo said...

Thank you for the helpful information although, not being from the States, I am not directly impacted by this.

I can however relate that just in the last six months or so here there have been a couple of very tragic deaths related to wandering. In one case, the child was in respite care and the others were at home with family when the incidents occurred. At least two of those children were habitual wanderers. The two youngest escaped at night after being put to bed and by the time the parents raised the alarm, it was already too late.

There's no one easy answer in all of this but its a discussion that needs to be had. One death from wandering is one death too many.

Anonymous said...

Thank you for working so hard to get us more info on this, Kim, especially when you are sick. I hope you are able to get some rest this weekend and feel better very soon!

Stephanie Lynn Keil said...

I really don't see how the Wandering code would induce restraint. How, exactly, would the wondering code induce restraint? Isn't that like saying that a diagnosis of Autism would induce restraint? Having an Autism diagnosis DOESN'T induce restraint but a "wandering" code does? I basically see the wandering code as another diagnosis, just like "mania" in bipolar disorder or "melancholia" in depression. It is used to describe specfic behaviors to aid in treatment. Bipolar mania requires different treatment than bipolar depression. Likewise, "wandering" behavior needs a different type of treatment from non-wandering behavior. I see it as a tool to help in better treatment, not as something that will cause restraint.

Roger Kulp said...

Been away for a while,you haven't covered too much that's been of interest too me,and I've had kidney problems,from carnitine accumulation,that should have been spotted years ago.Always something new with metabolic disease,never a dull moment.The good news is I am getting ready to go to Arkansas, and see Dr.Stephen Kahler,and maybe meet with Jill James.

As you know,I am a former eloper/ wanderer myself.With me,the episodes were always associated with blackouts,and episodes of what COULD be called temporary dementia.I would black out,and come around hours later, with no idea how I got where I did.This started right about the time I could walk,at three years old.Frightened the hell out of my mother,she still doesn't fully trust me to leave the house.

The episodes lasted right up until summer of 2009,when I first started treating my metabolic disease.Not an episode since. Metabolic and chromosomal disorders can often cause dementia like symptoms,and,of course,are also causes of autism.

I can't help but put some blame on the parents or caregivers of the autistic person doing the eloping for not working hard enough to find the underlying cause of the autism,and therefore the eloping. Even in chromosomal disorders,it can be managed,but not as well as in metabolic disease.

In the metabolic-autism Yahoo! group I like to post links to,the parents often spend years,like I have,in finding the cause,but it can be done.It takes a LOT of work,and time but it can be done.

Autism Mom Rising said...

Allison has done tremendous work on this issue and should be commended.

Thanks Kim for the text.

And thanks roger for sharing your experience with wandering & metabolic disorders.

My son stopped wandering completely within a week of going on the GFCF diet at age 3. He didn't wander again until age 8, after a gluten infraction, when he was found him crawling through the neighbor's doggie door....and he is terrified of dogs! His impulse control was gone until the effects wore off. Weird.