For those of you who aren't conversant with issues in the autism community, elopement or wandering off can be a high safety risk for autistic people, especially children and those who do not have much expressive oral language, or who require one-to-one (1:1) supervision for their safety and well-being. A 2012 study in Pediatrics found that almost half of families had experienced an elopement episode. (Note: the issue of wandering in autism is itself controversial in the autism community, which is beyond the scope of this post)
In 2011, the National Autism Association (NAA) developed a kit to help families reduce the risk of elopement, The Big Red Safety Box,which they sent to families for no charge. (It was and is available for sale.)
Contents Of The Big Red Safety Box:
- Two Door/Window Alarms with batteries
- One RoadID Personalized, Engraved Shoe ID Tag*
- Five Laminated Adhesive Stop Sign Visual Prompts for doors and windows
- Two Safety Alert Window Clings for car or home windows
- One Red Safety Alert Wristband
plus printed materials:
- A caregiver checklist
- A Family Wandering Emergency Plan
- A first-responder profile form
- A wandering-prevention brochure
- A sample IEP Letter
- A Student Profile Form
note: a version of the the printed materials included in the box may be downloaded free of charge from http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf
Funding and Distribution for The Big Red Safety Box
The program of distributing the Big Red Safety Box began in 2011, when NAA shipped 2,000 boxes free of charge. The exact number of boxes shipped to date is not clear, although as of April 4, 2012 , NAA claimed to have shipped 10,000 boxes.
The way the program appears to work is that NAA orders the contents of the box and has them shipped to an assembly plant, which appears to be a sheltered workshop for individuals with developmental disabilities. I believe NAA collects addresses for qualified recipients and ships the labels to the assembly plant for shipment (mailing or other delivery system). Anyone who has done this sort of thing knows that there's usually a minimum run -- let's say, in this case, 1,000 boxes.
The cost per thousand appears from the 2011 NAA 990 to be about $25,000.00. Autism Speaks, in an February 2014 press release, announced it had awarded
$30,000 in funding to the National Autism Association (NAA) to provide 1,000 Big Red Safety Boxes to families of individuals with autism.
A later press release raised the amount to $50,000 for 1,500 boxes, or somewhere around $34,000 per thousand.
However, as of April 8, 2014, this announcement was still up on the NAA website:
Yesterday, in interviews about Chili's decision not to sponsor a national Give-Back Day for the National Autism Association, NAA President Wendy Fournier was quoted as saying,
"This could have made a huge difference in how we could have served at-risk individuals in the autism community," Fournier said of the planned fundraiser.
My Observations and Questions
- NAA's reported budget from 2009-2011 averaged over $500,000 per year.
- As far as I am aware, the Chili's fundraiser was not the result of careful cultivation of Chili's by NAA's board or development staff, but a rather spur-of-the-moment initiative by Chili's national staff.
- If the Big Red Safety Box is so important to NAA's mission, why hasn't the NAA board worked more effectively to provide consistent funding?
- Has NAA undertaken any study to see if providing the box has had any positive effect?
NAA also lead the creation of the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration, whose mission is to prevent autism-related wandering incidents and deaths. The six member organizations are:
- AutismOne, represented by Teri Arranga
- Doug Flutie Jr. Foundation for Autism, represented by Chris Chirco
- National Autism Association, represented by Wendy Fournier, Lori McIlwain, and Rita Shreffler
- Talk About Curing Autism, represented by Moira Giammatteo
- Autism Speaks, represented Lisa Goring
- HollyRod Foundation, represented by Lori Schulman.
The organizations that are listed as supporting AWAARE are
- Age of Autism
- Autism Research Institute
- Florida Atlantic University Center for Autism and Related Disabilities