Methods: The research has an overall goal to test training and performance of potential disaster health care providers and families of CSHCN in the disaster response for special needs children. Families enrolled in MyEIF.org participated along with volunteer parents and CSHCN plus disaster health care providers in a disaster simulation exercise designed to train providers to use the MyEIF.org system, to educate parents regarding possible disasters that could affect their special needs child and to test responsiveness and flexibility of the web-based emergency health record system and its contained information. We conducted a disaster simulation exercise in which parents and children report to a simulated Emergency Department or Care Center with a scripted scenario of psychosocial and medical problems that were related to or complicated by their actual health history. Disaster Scenario: a string of tornados struck the Twin Cities metro area at twilight in June.
Results: Thirty-four CHSCN children from 26 families participated in the disaster drill and presented to 13 health professionals. Participants experienced an attitudinal change regarding emergency and disaster preparedness for CSHCN. Parental impression that an EIF would be helpful to the professionals increased from 3.53±0.21 (mean±SE) of 5 on a Likert Scale to 4.76±0.10 (p<0.0001). Parents were impressed that professional confidence increased (Likert response increased from 3.8±0.21 to 4.83±0.10 of 5, p<0.0001). MyEIF.org participants and control parents responded similarly. Professionals noted safety of their own families was a valid disaster concern (13 responses with Likert score 4.61 of 5.0). 7 of 13 professionals were initially unfamiliar with disaster immunization recommendations. Separate debriefings with parents and professionals elicited an impression that MyEIF.org would improve a disaster response.
Conclusion: The disaster drill created a model for a teachable moment for professionals and parents, engendering a positive feeling for use of the EIF for CSHCN to prepare before a disaster and stimulated parents to consider use of the MyEIF.org website to maintain an emergency and disaster-focused clinical summary for their CSHCN. All CSHCN parents (MyEIF.org and control) as well as the health professionals developed increased regard for importance of an EIF health summary for disaster management. This is the first reported special needs-focused disaster drill to use the actual parents and CSHCN children as participants in the drill.