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 dfp4@cdc.gov
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
