What follows is the recent blog post on Autism Science Foundation, the petition and letter from the NAA. Posted with permission from the ASF.
Keep Our Loved Ones Safe From Wandering-Related Injuries and Death
The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering. Please sign this petition to show your support of this effort.
The National Autism Association has brought this issue to the urgent attention of our federal health agencies. We believe 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 that are currently in use. Here's why:
- Physicians are largely unaware of this issue; therefore, cannot provide prevention materials or advice. A diagnostic code will increase awareness, advice and prevention-material distribution.
- 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. We feel a diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
- We believe a medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Currently, wandering is not looked at as a medical condition, but one of choice or bad behavior. This has lead 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 because of a trigger are at greater risk of restraint or seclusion. We believe a medical code will help establish safe protocols that work to eliminate triggers, thereby eliminating the need for restraint.
- We’ve seen reports of parents locking/secluding children in their rooms to keep them from wandering outside. While this is anecdotal information, we believe parents, schools and other care providers need better solutions. A medical code has enormous potential to help provide safe alternatives.
- 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 children/adults.
If you would like to submit a personal or organizational letter to the ICD-9-CM Coordination and Maintenance Committee, please email Donna Pickett at DPickett@cdc.gov. The deadline for submission of public comments is April 1, 2011.
I support the ICD-9-CM code for Wandering
Dear Ms. Pickett
I am in full support of the proposal to create a new ICD-9-CM code for wandering.
This is an urgent safety issue affecting individuals with developmental disabilities including autism. I believe that in addition to significantly increasing awareness of wandering, this code will help with the development of resources for families and caregivers, safe prevention strategies and education of first responders and search personnel on the challenges associated with searching for a person with a developmental disability. Additionally, it will work towards precluding the use of harmful restraint for individuals who are at risk.
Thank you for your work on this vitally important issue.
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