Everyone is welcome to attend The Help Group’s 2nd Annual Special Needs Resource Fair on Saturday, May 7, 11:00 am to 3:00 pm at The Help Group’s Autism Center located at 13164 Burbank Blvd in Sherman Oaks. This is a wonderful opportunity for parents and professionals to discover the wonderful children’s resources Los Angeles has to offer its special needs community. Bring the whole family. There will be food and fun for the kids including arts & crafts, face painting and more. No admission fee. For further information, please call Nicole Webb at 818-779-5188 or firstname.lastname@example.org.
IAN Network Launches Critical Survey on Autism & Wandering
Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or "bolt" puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.
Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.
"Although similar behavior has been studied in Alzheimer's disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD," said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. "The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe."
The survey will help researchers begin to answer important questions:
How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
Which individuals with ASD are most at risk? At what age?
What burden do efforts to thwart elopement behavior place on caregivers?
What can be done to protect individuals with ASD and support their families?
To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.
Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.
Frequently Asked Questions about CDC’s
Proposed ICD-9-CM Diagnostic Code for Wandering Behavior
Prepared by the Autistic Self Advocacy
What is this proposed “wandering” code that so many people are talking about?
A: The Center on Disease Control and Prevention
(CDC) has proposed the addition of a new diagnostic code to the International
Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM)
for wandering behavior.
The ICD-9-CM is the United States government’s official system of assigning
codes to medical diagnoses and procedures.
Why are disability advocacy and professional organizations concerned by this
new proposed coding?
A: Disability advocacy and professional
organizations from a wide variety of backgrounds, including the Autistic Self
Advocacy Network (ASAN), The Arc, TASH, the National Association of State
Directors of Developmental Disabilities Services (NASDDDS), the National
Disability Rights Network (NDRN) and others, are worried about the potential
unintended consequences that may emerge from a medical diagnostic code for
wandering behavior. Some of the reasons for these concerns include:
-No research exists to classify
“wandering” as a medical rather than a behavioral phenomenon and the code has
no definition that would differentiate wandering as a medical symptom from behavior
of individuals who simply wish to move from one place to another for any number
-By turning the behavior of wandering
into a medical diagnosis, people with disabilities with the most significant
challenges in communication could be made more vulnerable. For many adults and
children who cannot speak, attempting to leave a situation is one of the few
options available to communicate abuse, a sensorily overwhelming environment or
boredom from repetition of the same tasks over and over. By creating a medical
code for wandering,professionals could
misinterpret behavior as a medical symptom and miss the legitimate concern the
individual is trying to communicate..
-A wandering code could be utilized by
service-providers, educators and other professionals to restrict the freedom of
people with disabilities, particularly those in residential service-provision
settings. This code could easily be used to justify the use of overly restrictive
placements and techniques, such as restraint and seclusion,
institutionalization, restrictions on freedom of movement and chemical
Isn't this code just going to help gather data?
A: One of the stated objectives of this code is to
help gather additional data on wandering behavior. However, that is not the
only purpose of this new coding. First, advocates of this proposed wandering
diagnostic code have stated from the beginning that part of the purpose of this
is to shift clinical practice as well as to get private
insurance to pay for tracking devices and other anti-wandering measures.
Second, CDC’s proposal states that among the things this proposal is designed
to promote are provider deliberations on safety. While safety discussions are
important and necessary, many advocates are seriously concerned that this
wandering code will skew those discussions to increasingly more restrictive
service-provision settings as “preventative measure” against wandering.
Furthermore, there are other methods of gathering
data than creating an ICD-9-CM medical diagnostic code..Questions on wandering behavior have already
been added to a national health survey to be conducted by the Health Resources
Services Administration (HRSA) as well as to an additional survey effort
organized by private funders. This represents a much less intrusive way of
gathering information on this phenomenon without labeling people and without
the potential unintended consequences associated with a medical wandering
ICD-9-CM diagnostic code.
I’ve heard conflicting things about the public’s opportunity to comment on this
coding. Some people have said that the proposal was made available months in
advance – others have said that the CDC only informed the public about this new
coding the day before the public hearing on the topic was scheduled to occur.
A: While the agenda for the public hearing on new
ICD-9-CM codes was made available in February and wandering was listed as a
topic under the agenda, details of the proposal – including the lack of any
operational definition of wandering and the broad language the proposed code
utilizes – were not made available until the evening of March 8th,
the day before the March 9th-10th meeting of the ICD-9-CM
Coordination and Maintenance Committee meeting. As a result, by the time that
advocates had the opportunity to review the specifics of what CDC’s proposal
included, the public hearing had already been closed to new attendees.
What does the research say about wandering and the advisability of an ICD-9-CM
code for it?
A: No research exists that suggests that wandering
behavior is a medical rather than a behavioral issue. Of the seven citations
CDC uses in their proposal two are incidence studies used to establish the rate
of intellectual disability and autism spectrum disorder in the general
population, four are studies used to establish that wandering occurs in the
intellectual and developmental disability population and that deaths do
sometimes occur at the same time that accidents occur, and one is an online
survey from an advocacy group’s website. None of the seven citations includes
any information that supports looking at wandering as a medical rather than a
What about children who wander and are injured or even die, and what do the
opponents of this new code suggest we do to help them?
A: A number of options exist for addressing
wandering behavior that results in children and adults ending up in dangerous
situations, without resorting to overly restrictive or even abusive practices,
or needlessly restricting freedom of movement of people with disabilities. One
proposal that has received support from advocates on both sides of the proposed
ICD-9-CM code would be to include children with disabilities in the AMBER Alert
system, which exists to mobilize communities to respond to abducted children.
Other options that have been proposed include additional educational and
behavioral supports, accessible swimming lessons, police training and other
measures, which do not carry the same risks as an ICD-9-CM diagnostic coding.
Who will be making the final decisions about this coding and how can I
communicate my opinions on it to them?
A: The final decision on the coding proposal will be
made by the Director of the National Center for Health Statistics within CDC, Dr.
Edward J. Sondik.The period for written public comment extends to April 1st,
2011. Written public comment should be e-mailed to Donna Pickett at email@example.com
or sent by regular mail to the address below:
The Action Alert, petition and letter from ASAN follows. Posted with permission.
We need your help. 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 may be applicable 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. While wandering is a serious issue for many children and adults with disabilities, there are better ways of addressing it than creating a medicalized diagnostic label with serious unintended consequences for people with disabilities and our families. We can and must do better.
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.
Say NO to "Wandering" ICD-9-CM Code
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.
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.
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, atDPickett@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.
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.
I'd encourage readers to look at the member blogs to see other blogger's take on the wandering code and feel free to link your blog on the debate here in the comments. I've seen at least five bloggers dealing with this in the last two days.
If you choose to comment on another person's blog, I'd hope that you be courteous and not engage in threats or name calling. Perhaps we can have constructive conversations based on informed positions.
If I missed tweeting any, please let me know (my original two pieces are linked elsewhere).