Tell the CDC “No” on Abuse-Enabling “Wandering” Code – repost


We need your help. Last week, the ICD-9-CM Coordination and Maintenance Committee met to discuss the future of medical coding in the United States. The ICD-9-CM stands for the International Classification of Diseases, Ninth Revision, Clinical Modification, and is the US government’s official system of assigning codes to medical diagnoses and procedures. The day before the meeting, the Centers for Disease Control and Prevention (CDC) posted for the first time information on the codes under consideration – including a new medical diagnosis for “wandering” related behavior in children and adults on the autism spectrum and with other developmental disabilities. If approved, this new coding 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. Furthermore, this diagnosis carries no clear definition and the CDC’s proposal uses poor quality research to claim that it may be applicable to the majority of autistic children and those with other developmental and intellectual disabilities.

The CDC’s last minute proposal was made public only the day before the public hearing on these coding was scheduled to occur – well after the registration for people to give public comment had closed! Our only chance to have our voices be heard is to flood the written comment session before that deadline passes on April 1st. While wandering is a serious issue for many children and adults with disabilities, there are better ways of addressing it than creating a medicalized diagnostic label with serious unintended consequences for people with disabilities and our families. We can and must do better.

We need to send a clear message to CDC to reject this ill-advised proposal. You can e-mail CDC’s public comment contact person at In addition, we urge you to click on our online petition link and join hundreds of advocates who have made their voices heard. Our goal is to reach 1,500 signatures and we need your help:

Ari Ne’eman
The Autistic Self Advocacy Network


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