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Wandering and Autism: Wearable QR Codes

February 25th, 2015

if i need help banner

By Erin Wilson, Founder, If I Need Help.org
Last year, New Yorkers rallied to change laws regarding school safety and making tracking devices available to vulnerable people. According to Autism Wandering Awareness Alerts Response and Education (AWAARE), a 2011 study conducted by the Interactive Autism Network QR-code-pres-18x24-4Dthrough the Kennedy Krieger Institute found that:

  • Roughly half, or 49%, of children with autism attempt to wander from a safe environment (a rate nearly four times higher than their unaffected siblings)
  • More than one third of children with autism who wander are never or rarely able to communicate their names, address, or phone number.

As a mother of a child that has been severely affected by autism, I’ve had to deal with my son wandering on more than one occasion. After these awful experiences, my husband and I wanted to create a simple way to allow people to help our son if/when he is lost or wandering. So, we started a non-profit organization called If I Need Help that creates personal wearable QR codes.

QR-code-pres-18x24-3DQR codes are two dimensional barcodes that can be scanned by a smartphone or mobile device to hard link to or “object hyperlink” to a specific set of information or website. The QR codes we develop at If I Need Help are scanned or manually entered. From there, it links to a live profile to your child that can be edited in real time. The profile can be emailed to others when a search is needed. The barcode can be printed out with the free membership. We also offer personal codes on patches, pins, clips, ID tags for shoes, necklaces and ID cards. This way of identification and information is now also helping incapacitated people with mental illness, memory care or with physical conditions in which they may need help during critical situations.


Please go to www.IfiNeedHelp.org to learn more.


Learn more about Littman Krooks services at www.littmankrooks.com or www.specialneedsnewyork.com.

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Avonte's Law Addresses School Safety for Children with Special Needs

September 22nd, 2014

Avonte’s Law, which calls for audible alarms on school building doors, was passed by New York City Council and signed into law by Mayor Bill de Blasio in August. The law is named for Avonte Aquendo, a 14-year-old boy with autism who went missing from his school in Queens and was later found dead. Avonte’s Law is one action among many that are needed to protect students with special needs.

The new law requires the New York City Department of Education to evaluate the need for audible door alarms and install them where they are deemed necessary. The evaluation and a timeline for installation must be completed by May 30, 2015. The law as passed is not as strong as the original proposal, to simply require audible alarms on school doors.

On October 4 of last year, Avonte Aquendo went missing from the Center Boulevard School in Long Island City, Queens. Avonte had severe autism and was not able to speak. Volunteers participated in a massive search for the boy. His body was found in College Point along the East River three months later.

Mayor de Blasio said that the legislation would protect other children from tragedy. Vanessa Fontaine, Avonte’s mother, said she supported the new law, but the family still had unanswered questions. She filed a wrongful death lawsuit against several city agencies in June.

Avonte’s Law is one practical response to the tragedy, but more action is needed to keep children with special needs safe. Children with autism in particular may be prone to bolting or wandering, but children with other special needs often require additional supervision as well. On September 15, a 15-year-old girl with an emotional disabilities and ADHD disappeared from her school in Brooklyn, leading to a search by family members and police. Thankfully, Nashaly Perez was found safe, but her mother said that officials at the special needs school did not take the disappearance seriously enough. How many times does a child with a disability have to disappear from school before New York City takes strong and effective action?

Every child with special needs has different needs, and parents must ensure that a child’s Individualized Education Program (IEP) reflects the level of supervision that is needed, and that school officials are aware of the requirements and follow them. However, Avonte’s case is one tragic example that reveals that school officials do not always follow through on instructions in a student’s IEP. Avonte’s IEP included a warning from his mother that he needed one-on-one supervision, because he liked to run and would leave the building. An investigation showed, however, that no one who was with Avonte the afternoon he ran had been informed of that tendency.

Avonte’s Law represents a step in the right direction, but school officials and teachers can and should do more to protect children with special needs.


Learn more about special needs planning and special needs advocacy by visiting www.specialneedsnewyork.com.

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Wandering a Risk for Individuals with Autism

May 29th, 2013

Individuals with autism spectrum disorders may be prone to wandering or elopement, which can raise a significant health and safety risk. It is important for family members and caregivers to be aware of the risks and prevention strategies.

Wandering may include moving about with no apparent fixed plan in mind, or moving toward a location such as a landmark or place of obsession. Individuals with autism may also respond to loud noises or excitement by wandering or quickly fleeing. Elopement refers to a situation where a person with autism leaves a safe setting unnoticed or unsupervised. One of the leading causes of death among people with autism is drowning, exposure and other wandering-related factors.

Wandering has a medical diagnosis code approved by the Centers for Disease Control. Caregivers for people at risk of wandering should discuss the diagnosis code with the treating physician. A medical diagnosis can be helpful in obtaining insurance coverage for safety equipment and support requests for safety equipment in a school environment.

Caregivers should also be aware of strategies to prevent and deal with wandering. The first step is to understand wandering patterns and triggers in order to be aware of the problem. The individual’s home should be as secure as possible and the individual should be made aware of the importance of safety. Caregivers should consider identification materials such as a medical ID bracelet and location devices such as a personal GPS locator. Swimming lessons should also be considered. Finally, caregivers should make sure that neighbors and first responders are aware that an individual with autism lives nearby, which may improve response if an incident occurs.

For more information about autism safety, visit www.autismsafety.org. To learn more about our legal services for people with special needs, visit www.specialneedsnewyork.com.

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