Impact Feature Issue on Disaster Preparedness and People with Disabilities

Getting Ready for an Emergency in Maine:
Training By and For Self-Advocates


Kelly Baston is a member of Speaking Up For Us of Maine, and a co-trainer for the curriculum

Laurie Kimball is Training Coordinator with Adult Developmental Services, Maine DHHS, Portland

People with disabilities are among those most likely to be adversely affected in an emergency. Yet, when Adult Developmental Services at the Maine Department of Health and Human Services (DHHS) wanted to offer emergency preparedness training for the people they serve, they were surprised to find very little material out there for this audience. Believing that people with intellectual and developmental disabilities need to learn what to do for themselves to be prepared for a storm, flood or even a pandemic flu, Maine set out to create a co-trainer model that would meet that need.

We knew that people with disabilities would be the best creators and teachers of material for our audience, so initially DHHS contracted with Mobius, Inc., an agency that supports people with disabilities, to work with self-advocates to compile material for the curriculum. Maine’s self-advocacy group, Speaking Up For Us (SUFU), was approached and SUFU members got involved because they realized the crisis potential if people did not know the facts. In Maine there are regular floods, ice and snow storms, and power outages. SUFU believes self-advocates need to know for themselves what to do when these things happen because knowing what to do can provide the power that helps people to be safe and not panic or be scared. SUFU members were asked to identify the important training topics and some possible consultants/trainers, and interested members were hired as consultants to help refine and co-teach the curriculum with the Regional Training Coordinator for DHHS. A draft PowerPoint slide show was pulled together from available resources on emergency preparedness and brought to self-advocacy groups for comment. Co-trainers selected one concept to discuss for each slide, and chose graphics that would be meaningful. They also created a key, and a consistent approach in the notes, so trainers who could not read would be able anticipate what was coming up. Trainers reviewed formats for written information recommended in an emergency, and created their own forms based on one from the Red Cross. The result,Getting Ready for an Emergency, is a presenter’s manual and PowerPoint slide show for a workshop co-taught by two trainers, at least one of whom is an individual labeled with an intellectual disability.

At the end of each workshop, participants are familiar with the basic aspects of emergency preparedness: identifying an emergency, the importance of being prepared, listing items important to have in an emergency, how to decide about evacuation, and important written information to complete. Participants receive “go bags” purchased by DHHS to use to evacuate if they need to. They also leave with a graphic list of selections to put in a “go bag” or an emergency kit at home.

Training has been conducted in about 15 locations across the state, reaching more than 100 self-advocates, family members and supporters. The response at training events has been quite favorable, with most participants asking for more opportunities to learn. While it is difficult to gauge the effectiveness of the training at this point because it’s so new, during a recent storm with high winds, flooding, and power outages the DHHS regional office did not receive the usual deluge of calls asking for help figuring out what to do or how to get ready. While this is good news, DHHS is looking to other ways to measure and build upon the outcomes of the workshops.

Although the first round of training targeted individuals who live alone, it was clear from the start that everyone can benefit from the information. Some support staff who were present were misinformed about what to do, and they were able to learn accurate information. On other occasions, participants told of times their staff became incapacitated in an emergency and they needed to act to protect them both. Whether or not people have staff or full-time support, they need to know for themselves so they will be safe and won’t get stuck or be scared. For these reasons, both SUFU and DHHS would like to expand the audience for this training in the coming year and are currently discussing the best way to deliver it to as many people in as many locations as possible. We anticipate offering workshops at regional SUFU conferences, as well as to local self-advocacy groups. The curriculum is also being made available to others who would like to offer it in their areas.