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ICD-9-CM Coordination and Maintenance Committee Donna Pickett, MPH, RHIA - Co-Chair Email: DPickett@cdc.gov Dear Ms. Pickett, Our organization represents _______ families in the autism community. We are writing to express our support of a new diagnostic code for wandering as recently requested by the Centers for Disease Control. There is a significant need for wandering to be recognized as a serious medical issue for individuals with autism, as it currently is with Dementia patients. We believe a diagnostic code will help to protect individuals who have a documented history of wandering that puts them at higher risk for injury, trauma and death. It is vitally important that physicians become aware that children with autism often exhibit wandering tendencies placing them at risk of serious harm. Doctors and caregivers must work together to ensure that prevention strategies are made available and put into place to protect these children whose understanding or sense of potential danger is significantly impaired. A diagnostic code will allow for the collection of data on the incidence of wandering. It will create opportunities for the development of sound practices for prevention and the necessary education of doctors, caregivers, school administrators and staff, first responders/search personnel, and most importantly, families with loved ones at risk. Non-verbal children with autism present a unique set of challenges to search and rescue personnel. Many are unable to respond to their name when called. It is our hope that a diagnostic code will lead to increased awareness and the development of emergency search and rescue response protocols, leading to more successful outcomes for those who wander and become lost. In addition, law enforcement personnel must be educated on how to recognize an individual with a developmental disability who may have wandered and is unable to respond to questions or to police directives, which can often be wrongly interpreted as resistance. Sadly, restraint and seclusion techniques are being used in schools and homes across the country to prevent wandering incidents because caregivers know of no other way to keep their loved ones safe from harm. For example, school personnel frequently restrain children who are attempting to elope from a classroom setting. This is a dangerous and traumatic intervention that we believe this diagnostic code will help to avert. Safe prevention strategies should be developed and incorporated to protect this vulnerable population including de-escalation, positive behavioral interventions and emotional regulation techniques which are more effective at preventing wandering incidents and do not infringe upon the principles of selfdetermination. We believe every disabled individual with a history of wandering — who is at serious risk of injury, trauma or death — should have access to safety devices and
prevention materials regardless of the caregiver's income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their loved ones. It should be noted that not every person with a developmental disability wanders into potential danger, but for those individuals that are susceptible, the consequences can be devastating. They should be afforded every opportunity for protection from harm. Sincerely,