Reviewed by Sunita Chhatwani, MSc, MEd
Association for Science in Autism Treatment

Prior to sharing information about this incredible project, it is important to offer some background on the National Council on Severe Autism (NCSA). The NCSA is a relatively new non-profit organization which was launched in 2018 and came into existence primarily to address the concerns of people most significantly affected by autism and other developmental disorders and their families. The NCSA hopes to serve the autism community by being a voice to the unique needs of the people on the severe end of the spectrum, who may be left behind and underserved because of the nature of their disability and needs. These individuals by virtue of any combination of cognitive and functional impairments require continuous support and intensive service for most of their lives but according to the NCSA they are not adequately represented in current conversations about autism.

The NCSA focuses on this segment of the autism population and intends to work toward increasing capacity and a range of new options for this population. With their commitment to improving the long-term welfare of those with severe autism, the NCSA undertakes the responsibility of disseminating knowledge, educating the public and policymakers, promoting awareness and acceptance, and promoting research through their various initiatives. These initiatives include publishing a newsletter, maintaining a website, a blog, and conducting webinars. The organization has adopted some position-statements to promote realistic, pragmatic, clear-headed solutions for this population’s growing concerns, and conducted its first policy-summit in March 2021 to provide a platform to various experts & disclosure addressing autism policy and services.

I encourage you to take a few moments to review their website and follow them on Facebook, blog and Twitter. You can also checkout their newly launched YouTube Channel.

Last year, under the NCSA’s sponsorship, The September 26th Project was launched with the collective efforts of various autism and disability organizations (more information on collaborating agencies can be found by clicking on Partners). This annual emergency preparedness checkup for autism and special needs families was created in the loving memory of Feda Almaliti, an autism advocate, and her son Mu (Muhammed), who both perished in a tragic fire on September 26, 2020, in California. The goal of the September 26th Project is to develop and disseminate information about safety protocols to be used in an emergency. To achieve the goal the NCSA has created a comprehensive resource in the form of three simple, quick, easy-to-use safety-related checklists, checklists that may prevent similar tragedies.

These checklists, described in more details below, were developed by Kelly Bermingham, a Board-Certified Behavior Analyst, with the goal of supporting families in planning, executing and rehearsing steps to take in case of an emergency. Individual checklists which include links to various relevant resources are available as a free download from the website to complete the checklist.

  • The Fire Safety Checklist provides important information on the installation and monitoring of fire alarms, smoke detectors, and fire extinguishers. Recommendations include planning two exits out of the home, inviting families to consider having individuals with disabilities sleeping on the ground floors, preventing the spread of fire by closing doors, identifying a meeting place in the event of fire, and having a laminated/fire resistant personal information document ready.In addition to promoting fire safety practices in the home, this page also recommends visits to neighborhood fire stations, and how to register the family with the local firehouse so they are aware of your situation when responding to an alarm at your address.
  • The Natural Disaster Checklist provides valuable information about securing essential medical documents safely in fire/flood proof locations or saving the information electronically. It is further recommended that a disaster supply kit also be readily accessible if evacuation is needed. Recommendations include being prepared to live at home without power, keeping an emergency contact list, having a phone tree plan ready to call, and planning a safe meeting place if you become separated. The checklist also suggests learning about your rights regarding natural disasters, knowing the location of your assigned local evacuation/shelter, and enquiring in advance if they can accommodate individuals on the autism spectrum.
  • The Wandering Prevention Checklist provides important information regarding keeping the home and the yard safe and secure. Recommendations include having a locating device, (e.g., GPS), or using ID bracelets, considering teaching people with disabilities to swim, logging wandering attempts to gather information relevant to locations and potential reasons for wandering episodes that can be critical in planning wander prevention, and registering with local first responders and sharing information about the family member.

Every September 26th, the Project will remind families through their different social media platforms (Facebook, Twitter, blog and YouTube Channel), not to forget the need to plan and to tick all the boxes on the emergency preparation checklists. Their belief is that spending just 10 minutes every year is well worth the time because it may lead to saving the lives of your loved ones.

We urge you to work closely with your team to target the myriad safety skills highlighted on September 26.org. Like with every important skill, intervention efforts should aim for fluency and carryover and may require very systematic teaching and individualized task analyses to achieve the desired outcomes.

As this resource is expanded upon both with respect to breadth and depth, ASAT may continue to share details with our readers. In the meantime, please take a few moments to learn more about Feda and her son Muhammed, tributes here. Finally, we would invite our readers to peruse some of ASAT’s reviews, resources, and articles related to the safety concerns listed below.

Citation for this article:

Chhatwani, S. (2021). The September 26th Project: Turning tragedy into action. Science in Autism Treatment, 18(11).

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