Will you help us stand up for disability rights? 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 should apply 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.
I'm writing as someone who cares about disability rights to ask you to reject the proposed "wandering" ICD-9-CM code. By medicalizing a behavior like wandering, CDC runs the risk of doing more harm than good. No research support exists to classify wandering as a medical rather than a behavioral attribute. Furthermore, the quality of the research on wandering in general is very poor. For example, CDC's proposal uses a statistic (92% of parent report that their children had wandered from a safe environment) garnered not from a high quality research study but from an online survey on the website of an advocacy group. Is this what CDC considers high quality research?
In addition to the lack of evidence in support of this coding, the creation of a "wandering" ICD code threatens to cause real harm to individuals with disabilities and families. Labeling hundreds of thousands of children with a "wandering" diagnosis will increase restraint and seclusion in schools. Research shows that when schools expect that restraint will be necessary for a child as a result of a medical label, they are less likely to plan for less restrictive measures to support positive behavior and are thus more likely to subject a child to dangerous and potentially lethal restraint and seclusion.
Finally, CDC's proposal will hurt the civil rights of both adults and children with disabilities. For children with significant communication challenges, attempting to exit a situation is one of the few means of communicating abuse. CDC's "wandering" coding would make no meaningful differentiation between these attempts at communication and other forms of wandering. Furthermore, a "wandering" label will lead to the increased use of guardianship on adults who have had this label applied as children, even if they are no longer exercising "wandering" behavior. A "wandering" label will also increase the use of overly restrictive residential service-provision placements, like institutions and large group homes, as a way of preventing a perceived "flight risk" on the part of people with disabilities. This runs counter to the spirit of the Americans with Disabilities Act and the landmark Supreme Court case Olmstead v. L.C.
Thank you for taking the time to hear from the community on this important issue. We know CDC is working to improve the lives of people with disabilities and our families and thus hope that you will realize the unintended consequences of your proposal and reconsider this ill-advised coding.
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