We have a unique opportunity to provide protection for our family members from autism-related injuries and death, but we need to act quickly.
The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering. A diagnostic code for wandering will help protect at-risk individuals who have a documented history of wandering and will help to avert dangerous restraint and seclusion practices.
ASF strongly supports the proposal to include an ICD-9 CM secondary diagnostic code for “wandering in conditions classified elsewhere” under subcode “signs and symptoms”, where it can be applied to a range of disorders including autism, as suggested by the Centers for Disease Control and Prevention. This is a critical addition to the diagnostic code. Every year, individuals with autism wander away from safe environments and are injured or killed due to drowning, exposure to the elements or accidents. Better data on wandering associated with autism and other developmental disabilities should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand wandering and develop proper emergency protocols and responses while supporting self-determination principles. A subclassification for “wandering” is an important, needed addition.
ASF is working with the National Autism Association and other autism advocacy groups to protect our family members from both wandering related injury (and death) and restraint & seclusion. This new diagnostic code has the potential to do both. Here are just a few of the reasons we support adding a diagnosis code for wandering:
- A diagnostic code for wandering in disabled minors could open up critical dialogue between physicians and caregivers that have an at-risk child with a history of wandering/elopement from safe environments.
- A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention-education for doctors, caregivers, school administrators and staff, first responders/search personnel.
- Many nonverbal ASD individuals are unable to respond to their name when called. A diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
- Every disabled individual with a history of wandering – along with increased risk of injury, trauma and death because of wandering — deserves 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 children/adults.
- A medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Oftentimes wandering is not viewed as a medical condition, but one of choice, bad behavior, or happenstance. This has led to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.
- Children and adults with ASD who suddenly flee, bolt or run (elope) because of a trigger are at greater risk of restraint. A medical code will help establish protocols that work to eliminate triggers, thereby eliminating the need for restraint.
Please take these two action steps right now:
First, sign the NAA petition in support of protecting our family members!
Second, send a brief public comment to CDC indicating your support for protecting our family members. Two or three sentences will suffice. Simply write: “I support the ICD-9 proposal to create a medical diagnostic code for wandering.” Share your family’s personal story with the CDC. The comment period closes April 1, 2011. Comments can be submitted by e-mail to Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov
The Autism Science Foundation, together with other leading autism advocacy groups, is funding the first major survey to study, quantify and categorize the experience of wandering and elopement among individuals with autism spectrum disorders through the Interactive Autism Network (IAN). The survey is expected to be released later this month. Other funders are the Autism Research Institute, Autism Speaks, and the Global Autism Consortium.