Frequently Asked Questions about CDC’s Proposed ICD-9-CM Diagnostic Code for Wandering Behavior
Prepared by the Autistic Self Advocacy Network
Q: What is this proposed “wandering” code that so many people are talking about?
A: The Center on Disease Control and Prevention (CDC) has proposed the addition of a new diagnostic code to the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) for wandering behavior. The ICD-9-CM is the United States government’s official system of assigning codes to medical diagnoses and procedures.
Q: Why are disability advocacy and professional organizations concerned by this new proposed coding?
A: Disability advocacy and professional organizations from a wide variety of backgrounds, including the Autistic Self Advocacy Network (ASAN), The Arc, TASH, the National Association of State Directors of Developmental Disabilities Services (NASDDDS), the National Disability Rights Network (NDRN) and others, are worried about the potential unintended consequences that may emerge from a medical diagnostic code for wandering behavior. Some of the reasons for these concerns include:
- No research exists to classify “wandering” as a medical rather than a behavioral phenomenon and the code has no definition that would differentiate wandering as a medical symptom from behavior of individuals who simply wish to move from one place to another for any number of reasons.
- By turning the behavior of wandering into a medical diagnosis, people with disabilities with the most significant challenges in communication could be made more vulnerable. For many adults and children who cannot speak, attempting to leave a situation is one of the few options available to communicate abuse, a sensorily overwhelming environment or boredom from repetition of the same tasks over and over. By creating a medical code for wandering, professionals could misinterpret behavior as a medical symptom and miss the legitimate concern the individual is trying to communicate..
- A wandering code could be utilized by service-providers, educators and other professionals to restrict the freedom of people with disabilities, particularly those in residential service-provision settings. This code could easily be used to justify the use of overly restrictive placements and techniques, such as restraint and seclusion, institutionalization, restrictions on freedom of movement and chemical restraint.
Q: Isn't this code just going to help gather data?
A: One of the stated objectives of this code is to help gather additional data on wandering behavior. However, that is not the only purpose of this new coding. First, advocates of this proposed wandering diagnostic code have stated from the beginning that part of the purpose of this is to shift clinical practice as well as to get private insurance to pay for tracking devices and other anti-wandering measures. Second, CDC’s proposal states that among the things this proposal is designed to promote are provider deliberations on safety. While safety discussions are important and necessary, many advocates are seriously concerned that this wandering code will skew those discussions to increasingly more restrictive service-provision settings as “preventative measure” against wandering.
Furthermore, there are other methods of gathering data than creating an ICD-9-CM medical diagnostic code.. Questions on wandering behavior have already been added to a national health survey to be conducted by the Health Resources Services Administration (HRSA) as well as to an additional survey effort organized by private funders. This represents a much less intrusive way of gathering information on this phenomenon without labeling people and without the potential unintended consequences associated with a medical wandering ICD-9-CM diagnostic code.
Q: I’ve heard conflicting things about the public’s opportunity to comment on this coding. Some people have said that the proposal was made available months in advance – others have said that the CDC only informed the public about this new coding the day before the public hearing on the topic was scheduled to occur. What’s true?
A: While the agenda for the public hearing on new ICD-9-CM codes was made available in February and wandering was listed as a topic under the agenda, details of the proposal – including the lack of any operational definition of wandering and the broad language the proposed code utilizes – were not made available until the evening of March 8th, the day before the March 9th-10th meeting of the ICD-9-CM Coordination and Maintenance Committee meeting. As a result, by the time that advocates had the opportunity to review the specifics of what CDC’s proposal included, the public hearing had already been closed to new attendees.
Q: What does the research say about wandering and the advisability of an ICD-9-CM code for it?
A: No research exists that suggests that wandering behavior is a medical rather than a behavioral issue. Of the seven citations CDC uses in their proposal two are incidence studies used to establish the rate of intellectual disability and autism spectrum disorder in the general population, four are studies used to establish that wandering occurs in the intellectual and developmental disability population and that deaths do sometimes occur at the same time that accidents occur, and one is an online survey from an advocacy group’s website. None of the seven citations includes any information that supports looking at wandering as a medical rather than a behavioral issue.
Q: What about children who wander and are injured or even die, and what do the opponents of this new code suggest we do to help them?
A: A number of options exist for addressing wandering behavior that results in children and adults ending up in dangerous situations, without resorting to overly restrictive or even abusive practices, or needlessly restricting freedom of movement of people with disabilities. One proposal that has received support from advocates on both sides of the proposed ICD-9-CM code would be to include children with disabilities in the AMBER Alert system, which exists to mobilize communities to respond to abducted children. Other options that have been proposed include additional educational and behavioral supports, accessible swimming lessons, police training and other measures, which do not carry the same risks as an ICD-9-CM diagnostic coding.
Q: Who will be making the final decisions about this coding and how can I communicate my opinions on it to them?
A: The final decision on the coding proposal will be made by the Director of the National Center for Health Statistics within CDC, Dr. Edward J. Sondik.The period for written public comment extends to April 1st, 2011. Written public comment should be e-mailed to Donna Pickett at firstname.lastname@example.org or sent by regular mail to the address below:
ATT: Wandering ICD-9-CM Code
National Center for Health Statistics
ICD-9-CM Coordination and Maintenance Committee
3311 Toledo Road, Room 2402
Hyattsville, Maryland 20782