From a simple list of needed medications to a comprehensive two-part training program for first responders, the Emergency Preparedness and Response Initiative at the Eunice Kennedy Shriver Center, a unit within UMass Medical School’s Commonwealth Medicine division, promotes equitable and efficient emergency planning and response for people with disabilities, both in Massachusetts and across the country.
Begun in 2005, the initiative was born out of concerns raised after the Sept. 11, 2001 terrorist attacks and Hurricane Katrina eight years ago. Negative impacts to people with disabilities due to both disasters and policy reviews revealed that there were inadequate plans in place at the local, state and federal levels to help people with disabilities during an emergency.
“Initially what we were interested in was trying to get people to understand how vulnerable populations need special attention and care to survive” during emergency situations, said Shriver Center Associate Director Charles D. Hamad, Ph.D., whose ideas led to the creation of the initiative.
“I was particularly interested in having a systems change,” said Hamad, who is also executive director of the Shriver Center’s University Center for Excellence in Developmental Disabilities.
That change is underway with the help of detailed programs that target two groups: the disability community and those who would respond in an emergency, including police, fire fighters, emergency managers and planners, public health officers, emergency medical service and healthcare personnel.
“We are trying to help make communities more resilient,” said Sue Wolf-Fordham, J.D., the project manager in charge of the Shriver Center initiative. “People with disabilities are not just victims, but like all of us, bring a lot of strengths to building community resilience.”
One of the initiative’s largest programs is the Active Planning project, a two-part event that trains city, town and regional volunteer and professional responders and officials involved in emergency planning and response to not only consider the needs of people with disabilities - but to address those needs in their emergency plans. Representatives from over one hundred cities and towns in Massachusetts have participated in the training to date.
“One of the reasons we developed the project is that research showed that there is limited knowledge of the needs of people with disabilities in the first responder community,” said Nancy Shea, J.D., MPA, the project coordinator. “The reaction from most was, ‘I didn’t even consider that. Thank you.’”
The project includes a community stakeholder meeting that brings together local emergency responders and disability community members to talk through ways to make improvements and fill gaps in service.
Patrick Gleason, M.A., a dataresearch specialist at the Shriver Center, helped facilitate meetings with five Massachusetts communities. It was eye-opening for many, said Gleason, who has cerebral palsy and uses a wheelchair.
“Individuals with disabilities often have a higher percentage of more detailed emergency needs. But just because two people have the same diagnosis does not mean they have the same needs,” Gleason said. “If you haven’t been exposed to people with disabilities you wouldn’t think about it. I wouldn’t either. So we use our resources to share our knowledge base.”
The information sharing also extends to healthcare personnel, who can get similar training through an online course.
Another game-like course that simulates emergencies is currently in development, and would be available for both first responders and healthcare workers. That course was developed with the assistance of Janet Twyman, an associative professor of pediatrics at the Shriver Center who has a background in instructional technology and design.
“We developed an interactive module that first responders could use on their own time in their own setting to both learn about people with disabilities and what their needs are in emergencies, and then have the opportunity to role play what they learned in the module,” Twyman said.
The course, which could take two to four hours to complete, gives participants a series of rescue scenarios once disaster strikes - a hurricane hits the fictional town of Amity, N.J. The module, which includes a pre- and post-test, does not let the user move forward until they demonstrate mastery of the material.
Two recent projects included a mini-conference for people with developmental and intellectual disabilities, and both their families and service providers; and a meeting with Japanese medical personnel to share information and ideas about enhancing emergency preparedness education and response plans for people with disabilities in that country.
The mini-conference, Emergency Smarts, featured a social media safety presentation as well as a self-preparedness presentation and “Jeopardy”-style activity developed by Shriver Center consultant Nate Trull, a self-advocate with a developmental disability.
Trull has broken down the often complicated self-preparedness instructions and potential event scenarios to make them more accessible to people with disabilities. Through the “Jeopardy”-style activity and his workshops, he and the Shriver Center have taught more than 800 people with disabilities about the importance of self-preparedness.
“I give them the knowledge. I give them the power. I help fellow self-advocates and people with disabilities so that they can better empower themselves,” Trull said of his work.
Last fall, Wolf-Fordham met at Boston Children’s Hospital with a visiting delegation of psychiatrists and social workers from Kohnodai Hospital in Ichikawa, Japan to discuss ways Shriver Center projects might be replicated and resources shared in their country.
For Hamad, it has been invigorating watching the Initiative grow from a list of concerns to a complex grouping of programs that touches all areas of emergency preparedness and response and its impact on the disability community.
“I think the thing that is most valuable about this initiative is being able to call attention to the need,” Hamad said. “That is the first step: understanding that the need even exists.”