Medical Diagnostic Code for Wandering Petition

Sign the Petition HERE

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.

Sign the Petition HERE

Yet another autism wandering / drowning

FORT LUPTON - There is little she can say or do to bring her three-year-old son back. But Bonnie Lawson is hoping this story will help others avoid a similar fate.

Lawson and her son Aiden were playing around the house Saturday when Aiden managed to slip out the sliding door into the back yard.

Once he was in the back yard, Lawson said Aiden climbed over the fence and ran toward a pond. No one saw him take off.

Lawson, her husband Alan, and several neighbors searched and searched, but they couldn't find him.

"There was no sign of him," she said.

About 45 minutes later, a neighbor saw something floating in the pond. It was Aiden's body.

More: http://www.9news.com/news/article/182604/188/Parents-talk-about-sons-drowning

Dear IACC, Another Autism Wandering Drowning Death

Dear IACC Subcommittee on Safety Issues and Autism Spectrum Disorder,

This is why safety related issues should be included in your work!!!

Girl, 7, who drowned in Lawton had struggled to overcome autism

LAWTON — Doctors once said Savannah Martin would never talk, but she defied the early diagnosis and started to speak. Then she learned to read. She even tried to learn to swim.

But Sunday, Savannah, 7, who was autistic, slipped away from her home in Lawton and headed for a chilly pond nearby. Her brother, Tommy Martin, 2, who was wearing a bicycle helmet, may have followed her to the pond, said the children’s’ aunt, Ruth Sanchez, 35.

Savannah was found face down in the pond, which was about 50 yards from her home. Her brother was floating upright next to her, buoyed by the Styrofoam in his helmet.

Read more: http://newsok.com/girl-7-who-drowned-in-lawton-had-struggled-to-overcome-autism/article/3543238#ixzz1EmvyupWX

Rest easy parents. Autism Kids Don't Die in the Winter time

As always, a great article from Katie Wright.

Sharon Lewis continues to astonish me. In the history of IACC I have never before heard from such an insensitive and compassionless member as she. Ms. Lewis, who is not a scientist, not a clinician, not an autism specialist and not the parent of an affected child, represents the the Administration for Developmental Disabilities at HHS. Ms. Lewis is hostile to towards IACC’s proposed letter to Dr. Sebelius alerting her to the alarmingly high rate of child mortality in the ASD community and is opposing an IACC program to prevent ASD child mortality. Yes, you heard correctly, Lewis is against a program to prevent ASD child mortality. The anti-wandering program in question is directed towards the needs of severely affected, often nonverbal children with autism.

Henry Claypool of the federal Office on Disabilities, also does not appear understand this issue or what is at stake. Mr. Claypool argued there is no rush to address wandering deaths now, “because kids don’t die in the wintertime.” OK, Mr. Claypool you need to introduce yourself to the parents of James Delorey. Last year their 7-year-old son went missing and died. James suffered horribly for two days and two nights in frigid temperatures. He was found with a faint heartbeat but later died at the hospital. James probably heard the rescuers calling his name, over and over again- but he was nonverbal he could not respond. In January 2011 alone the media has reported on 8 incidents of missing ASD children. Just because fewer children die in the winter than in the summer, acting now should be less of a priority? However, Mr. Claypool deserves credit for saying he was open-minded to changing his mind. If he would like to talk to AWAARE program founder Lori McIlwain and Wendy Fournier of NAA, I am sure that could be arranged.

Sharon Lewis is not open to changing her mind. Ms. Lewis repeatedly stated that she does not feel that IACC “should elevate” the prevention of wandering deaths of ASD children “at the expense of other issues.” Ms. Lewis please enlighten me, what “other issues” are so much more important than keeping small children from dying? How does combating child mortality come at the expense of “other issues?”

Ms. Lewis went on and on about how she has spoken with hundreds families (not mine!) and people with developmental disabilities and she does not believe the prevention of wandering deaths as a high priority.

More at Age of Autism: Why Is IACC's Sharon Lewis Against Protecting Against Autism Spectrum Child Mortality?

Draft: Letter to Secretary Sebelius (IACC Subcommittee on Safety Issues and Autism Spectrum Disorder)

Draft: Letter to Secretary Sebelius - January 12, 2011

AMBER alert or Silver alert, but tailored to the specific needs and characteristics of people with autism who wander, to help families and communities ...

www.iacc.hhs.gov/.../draft_letter_safety_sebelius_011211.pdf