By Linda Crerar
Society continues to be reminded of the importance of making emergency planning efforts inclusive of people of all ages and abilities as required by the Americans with Disabilities Act and the Rehabilitation Act. ACL. I interviewed Jim House, disability community leader working to ensure that people with disabilities are included in emergency preparedness efforts.
Jim House is the Emergency Planning Disability Integration Manager working with the Coalition on Inclusive Emergency Planning (CIEP). (www.wasilc.org/coalition-on-inclusive-emergencyplanning ) CIEP is a statewide cross-disability advisory group that works with state and local emergency stakeholders to build disability accessibility and inclusion into all aspects of emergency management. The Coalition provides technical advice on physical and programmatic access, effective communication and fosters working relationships among emergency managers. The members are local people with expert advice for inclusive access and functional needs practices and technical training for all Americans with Disabilities Act and other disability rights laws.
Participation in CIEP is open to all organizations and individuals interested in fostering the vision on disability inclusion in emergency preparedness and response and recovery by actively engaging in the Coalition work. CIEP is in its sixth year administered by the Washington State Independent Living Council (WASILC) is funded by a grant from the WA Department of Health Office of Emergency Preparedness and Response. The National Disability Rights Network (NDRN), a membership organization that represents Protection and Advocacy Systems and the Client Assistance Programs for individuals with disabilities. There is an Emergency Preparedness Sub-Committee of the National Council on Independent Living (NCIL). NCIL is a membership organization representing individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils, and other organizations. NCIL and NDRN both have had Memoranda of Understanding with the Federal Emergency Management Agency’s Office of Disability Integration and Coordination (ODIC). CIEP also partners with The Partnership for Inclusive Disaster Strategies (PIDS), the only disability-led 501(c)(3) nonprofit in the United States that focuses on national-level emergency preparedness initiatives.
What does an inclusive approach to emergency preparedness look like to you?
Jim House: We often think we know everything we need to know about how to prepare for emergencies. Evacuation systems are not currently accessible for people with all types of access and functional needs. Katrina made us aware of how important service animals are to people with disabilities. Some people with
disabilities were left behind because they could or would not leave their service animals and pets behind. Shelters that were established during Katrina’s recovery were not set up to accommodate people with disabilities. When this happens, some end up going without necessary, life-sustaining assistive technology, durable medical equipment, and medications. People with disabilities get turned away from shelters and routed to nursing homes and institutions that can quickly get into and challenging to get back out of. Emergency announcements were all verbal, and people who could not hear or understand were left out of the communication channels unless the updates were captioned or written in plain language. Because there was little planning from emergency managers for people with disabilities, responders responded from a medical model perspective.
People with disabilities were unnecessarily sent to nursing homes and hospitals as shelters instead of making shelters accessible from the beginning. One of the problems with that model is that there is nothing medically wrong with these folks, and then they have extended stays within these facilities, which is not
What did that time in our country’s history teach us about preparedness?
Jim House: My first experience in emergency preparedness began in 2004 when I was with TDI, an advocacy organization based in Washington, DC. TDI received a $1.5M Federal grant from the US Department of Homeland Security to develop a training course on communication barriers experienced by the deaf and hard of hearing communities and first responders. In August 2005, while we were developing this course, our training partners at the National Center for Biomedical Research and Training/Academy of Counter-Terrorist Education at the Louisiana State University in Baton Rouge had experienced the brunt of Hurricane Katrina. That gave us a front-row seat where we witnessed up close the systemic gaps in access and functional needs. There were many lessons learned from this disaster, and that was when emergency management groups started to plan WITH not FOR people with disabilities and other access and functional needs.
What does “inclusive emergency preparedness” mean to you, and what are the important key concepts about this approach?
Jim House: A. It is “easy” to plan for the majority of our population, who have no additional access and functional needs. Still, it falls very short of the Whole Community Approach principles. The whole community approach considers five areas: Communication, Medical, Independence, Security/Support/Self-determination, and Transportation (C-MIST), keeping in mind the goal is threefold: Effective Communication Access, Programmatic and Physical Access.
B. The pandemic challenged us to think creatively and more inclusively. Typical plans that used high school gymnasiums for congregate shelters had to be revamped to use motels and dormitories for non-congregate shelters. Planning for people with disabilities benefit people who are aging as they experience new
limitations in their daily living activities. During the wildfires in September 2020, CIEP received several requests for assistance from the American Red Cross. Some elderly survivors lost their mobility devices in the fire. The centers for independent living (CILs) collaborated with local community-based organizations (CBOs) to provide replacements within days. Other survivors had to work with disability and housing advocates to find new homes that were accessible and affordable.
C. Access and functional needs conversations need to be at the forefront of all planning and implementation, not as an afterthought.
What do you see as your Coalition’s role in preparing for and responding to an emergency?
Jim House: Emergency Managers are indeed the experts in what it takes to prepare for emergencies. No one knows more about evacuation routes, technical specifications required of a shelter, and all the preparations that must be made before an emergency. No one knows more about what people with disabilities need than actual people with disabilities in all aspects of life.
What do you see as your and the Coalition’s role in creating strong partnerships with emergency managers to bring the two spheres of expertise together to plan adequately and inclusively for everyone and work together quickly and effectively during an emergency?
A. CIEP hosts biweekly Zoom calls where stakeholders report out on Access and Functional Needs (AFN), highlighting “best practices” and “shortfalls” that were uncovered during the ongoing response to the COVID-19 pandemic. When other disasters are co-occurring such as wildfires or floods, CIEP calls are held more frequently. This allows emergency management to hear directly from the disability community about what is working or not working. DOH and EMD offer us many opportunities to collaborate on AFN issues, and they have been very responsive in listening to our concerns. We share lessons learned with national advocates and local partners from throughout the state. Our local partners invite us to conduct accessibility assessments to ensure all locations are accessible to everyone through effective communications, physical access, and programmatic access.
B. Another critical area is that CIEP Manager provides Technical Assistance (TA) to local emergency management on their emergency plans on accessibility. CIEP encourages both local emergency managers and disability advocates or local Disability Action Groups (DAGs) to collaborate and partner when it comes to
developing plans for the community.
C. Part of the DOH contract with CIEP includes developing partnerships with not only EMD but the local/regional healthcare and aging networks as well as communities of color and those who use other languages.
• This often means participating in national, state, and local collaborations for emergency preparedness, surveying shelters for accessibility and helping to select shelter locations, identifying service providers for people with disabilities that can be activated during an emergency, and assisting with case management and identifying/providing resources for people with disabilities during an emergency.
• While CIEP stakeholders appreciate their partnerships with disaster planners throughout the state, there is no substitute for having an AFN expert as an
integral part of the Incident Command System (ICS) within emergency management agencies. These experts have a trained eye on best practices and shortfalls that come up in all-hazard planning for the whole community and be able to make the necessary adjustments before they become a real issue that would require additional time and expense to repair. Also, no single individual can become an expert on all things related to disability. The life experience of a deaf person is entirely different from someone who is blind or uses a wheelchair, which is why the CIEP network of stakeholders brings a wide variety of useful best practices for the state or county.
• This also means hiring people with disabilities and/or SMEs on disability within emergency management. If you continue to think the same way from an ableism viewpoint, you will not be able to think outside the box and develop innovative ways to be inclusive. And typically, when you plan for people with
disabilities, you are also planning for the general population. An example is curb cuts, ramps instead of stairs, etc.
What is one thing that people with disabilities can do to be more prepared for an emergency?
Jim House: Our emergency management systems have a very real obligation to practice inclusive preparedness so that they are equipped to accommodate everyone during an emergency. How do we educate and support our emergency management systems to fulfilling this commitment to all Americans?
• Individuals with disabilities must understand that the first 72 hours immediately following a disaster are chaotic. They must plan to meet their own needs to the extent possible. Services offered, such as evacuation, sheltering, and mass care, are required to be accessible to people with disabilities, but that does not necessarily mean they will be.
• EMD is advising people to plan “shelter in place” for up to two weeks in the event of a major earthquake where help may not arrive for many days. This includes having access to enough water – one gallon per day per person/animal in your household.
• There is a wealth of information and tools assembled: (name sources: WASILC, CIEP, CDC, Ready.gov, Georgia Tech, NAD, etc.) to help you make a plan for an emergency, and NDRN encourages everyone to check it out.
• The first and most important aspect of being prepared is to have a plan. Questions you should consider include: Where will you go if you need to evacuate? Will you need a caregiver with you? What supplies will you need to have with you to be self-sufficient for three days if necessary? Who will know your communication plan? Family? Neighbors? Friends?
• Have an emergency “go kit” in your home, workplace, and a vehicle in case you need to evacuate.
• Know where closest accessible shelters are located.
• Take any equipment you will need with you, i.e., shower chair, mobility devices, medications, hearing aid batteries, etc.
• Determine what you will need and how you will transport it and make transportation arrangements beforehand and have a backup plan.
• Sign up for local community alerts or have a plan to keep informed. Set your cellphone to accept WEA alerts.
• Know how to communicate with 9-1-1 if you prefer to use text.
• If you do not have a cell phone, plan how you will stay informed through trusted friends and neighbors.
Who benefits from accessibility?
Jim House: Everyone! For example, I earlier mentioned curb cuts. Another example is captioning, which has become our “electronic curb cuts,” where something initially designed for deaf TV viewers now sees 80% of those using captions for online videos are hearing.
Why is this work so important, and can you talk about the importance of having positions w/AFN expertise in EM and the value of cross-disability advisory groups?
Jim House: States with an AFN coordinator within their emergency management agency have a better track record in implementing best practices. No one person can be an expert in ALL AFN issues but should have access to a vast network of local cross-disability advocates throughout the state.
How has your approach to accessibility changed over time? What are your lessons learned and best practices?
Jim House: It took a while, but now emergency management officials are beginning to listen to people with disabilities and other access and functional needs. When planning FOR us, it puts us in an adversarial relationship, but now that they are planning WITH us, we make significant progress in inclusive planning because our goals are now the same. People with disabilities can make great emergency planners and instructors because they can show others how things are done.
Will you talk about the Accessible CERT Program and the “universally accessible curriculum design, training game, training video, and train-the-trainer course?
Jim House: Joining an Accessible CERT program like the one Redmond offers is one of the best ways for any individual to get started in emergency preparedness. Most people join for their benefit, but many members stay with CERT and participate in exercises and other activities year-round. I know of someone in Portland, Oregon, who took this training and is now working for the Portland Bureau of Emergency Management. Once an individual gets training that provides another level of expertise for people with disabilities to come to the table and provide input to emergency managers to plan for the community.
What are some of the tools available to test the accessibility of a website?
Jim House: These days, having an accessible website is key to full participation in society without barriers. One good list of Web Accessibility Evaluation Tools from:
• W3C Web Accessibility Initiative can be found at: https://www.w3.org/WAI/ER/tools/
• There is another layer of accessibility within the IT department to have the knowledge and/or expertise to address accessibility for websites. This isn’t a static issue as technology and accessibility are continually improving and changing.
Is there anything important that you have not been asked or talked about? Are there meanings of any terms you used that you would like to clarify? What is the Independent Living Philosophy?
Jim House: Independent Living philosophy emphasizes consumer control, the idea that people with disabilities are the best experts on their own needs. Having a crucial and valuable perspective to contribute and deserve equal opportunity to decide how to live, work, and take part in their communities, particularly about services that powerfully affect their day-to-day lives and access to independence. The Independent Living Movement is founded in the belief that people with disabilities, regardless of the form, have a shared history and a shared struggle. We are a community and a culture that will advance further banded together politically.
What other people or resources would you recommend?
Jim House: Join CIEP: https://www.wasilc.org/coalition-on-inclusive-emergency-planning
Find out if there is a local disability action group in your community:https://ecology.wa.gov/Regulations-Permits/Reporting-requirements/Emergency-Planning-Community-Right-to-Know-Act/Local-Emergency-Planning-Committees#o
See what your local Center for Independence is doing around emergency preparedness:https://www.wasilc.org/centers-for-independent-living
Start making a “preparedness kit” today. It might take you some time, but something is better than nothing:https://mil.wa.gov/preparedness?fbclid=IwAR28YQxqRCOh4YmIvjJ3EAmr7ufac1ZWo6Qg4Xtfpqh4Uc0nfvcnRS80GU8
Join your local Community Emergency Response Team (CERT)
For the Zoom transcript of the interview with Jim House, please visit: https://www.coehsem.com/interview-with-jim-house-on-4-16-2021/