First, I have to give credit and much appreciation to Wendy Fournier – The President of National Autism Association who has been a relentless laser about autism and wandering. NAA has managed to put this in front of IACC committee’s face since 2010. And, I think the issue has come a long way to raising awareness to a recent study which I will link below to asking U.S Dept of Justice to help and intervene.
A recent study stated half of children with autism will wander off with no regard to safety. The previous IACC committee sent a letter about this to HHS Secretary Sebelius and the Secretary responded. In addition, this IACC committee invited Mr. Lowery from National Center for Missing and Exploited Children to explain how they train law enforcement and first responders when a child with autism is missing – very insightful report. I do however think there could be more training for more states and more law enforcement.
We also heard from Mr. Slowikowski from the U.S Dept of Justice because many of the IACC members were asking about establishing an Amber alert system for autism & wandering.
Mr. Slowikowski stated the Amber alert started with a legislation from Congress and Dept of Justice can not do something similar for autism. We would have to go to Congress and ask for an Autism Wander Alert legislation – though he said he does not advice anyone about any legislation being a Federal employee and all. He basically told us DOJ or its staff can not initiate.
In addition, Dr. Perrin (the guest with the most hats today) stated that while he can’t promise autism and wandering will be part of the agenda for the next AAP meeting, he will tweet about it and see if he can ask state chapters to send out more awareness information on it and maybe they won’t charge the tool kit so that peds can get it for free and in return use to educate their families.
We also found out that while CDC and CMS created an ICD 9 code for autism and wandering – it has not been used a lot. I think we again need to educate the public, parents, advocates and doctors to use this code for any child that wanders off. This will assure coverage for both public and private insurance companies.
I also think because every state has some kind of Home and Community waiver for people with disabilities – parents should contact that department in their state and ask coverage and resources available for their child. For example, it can cover home safety improvements including locks with codes, window safety and GPS bracelets.
Ironically and sadly – the night before IACC meeting in Washington DC – a young boy with autism wandered off and was found in a car dead. If this kid had a GPS tracking system – he would have been found faster, if his house was safe for him – he would not have gotten out.
We need to make sure our children with autism are safe in their environment.
Here is my take;
1. We need more family and parent education about Wandering, what services and resources are available for each state.
2. Parent advocate agencies can integrate this in their autism workshops.
3. AAP and its state chapters need to add wandering into their national and state meetings.
4. The new ICD 9 code for wandering must be used as necessary.
5. Any parent whose child wanders should look into their states home and community waivers for people with disabilities to see what they will cover.
6. Schools and other therapy areas must incorporate “wanders” into the child’s IEP, ITP, etc.
7. Finally – we need to ask some of the elected officials on the National Autism Caucus in Congress if they would write a legislation for autism wander alert similar to the amber alert system.
Thanks
Idil – Somali Autism Mom & Minority Advocate