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A Manifesto for Achieving Whole Community Inclusive Emergency Management Solutions

July 18, 2017

A Manifesto for Achieving Whole Community Inclusive Emergency Management Solutions

Paul Timmons and Marcie Roth

Strategies for optimizing resources for achieving inclusive emergency preparedness WITH your community rather than FOR them.

1. Thou shalt ALWAYS begin with universal accessibility and plan for accommodating individual access and functional needs when universal accessibility isn’t enough to provide equal access. This is achieved by committing to universal accessibility throughout all aspects of emergency preparedness, disaster response, recovery and mitigation and engaging disability experts to identify strategies and solutions for meeting specific functional needs.
2. Thou shalt not plan for emergency sheltering by planning to meet the access and functional needs of disaster survivors in settings such as special needs shelters, medical needs shelters or settings that do not meet the definition of a most integrated setting. People who live outside hospitals with or without assistance before evacuation must be provided assistance to maintain health, safety and independence in the most integrated setting throughout sheltering and transition back home. This includes redundant methods for providing access to power to charge assistive devices. Transfer to a hospital or medical shelter during evacuation, sheltering or recovery is only appropriate when the individual requires hospital level of care due to acute medical needs. Preplanning to achieve equal access and meet functional needs through evacuation and sheltering is mandatory. Planning to place people in medical settings to meet disability related accommodations is a violation of their civil rights.
3. Thou shalt not plan for or rely on any system of tiered or graded sheltering. Shelter settings must either have just-in-time solutions in place or they should not be considered. Maintaining a repository of inaccessible or “plan B” options as a “tier” or “grade” is not a solution and does not satisfy your equal access and non-discrimination planning obligations.
4. Thou shalt not use acronyms to describe people, in written or spoken word. Take the time to say, sign or print the words. Acronyms are offensive, confusing, and dehumanizing. PLEASE do not describe people as AFN, DAFN. PAFN, PWD, DD, ID, MH, ASD, D, HOH, DB, etc.
5. Thou shalt not speak with the public about emergency and disaster related issues, provide emergency alerts, warning, actionable information, print or electronic information or programs and services without providing equal, timely and effective communication access via qualified sign language interpreters, real-time open captioning, large print, plain language, braille, and instructions for obtaining effective communication accommodations. Information must be accessible to be actionable.
6. Thou shalt not confuse government leadership and public safety obligations to support community inclusion with being led by the people you serve. The role of government is to support community leadership, not to serve in the role of leader. Nothing about us without us. Plan with us, not for us.
7. Thou shalt not position sign language interpreters so they are not seen in a camera lens. Make sure you always have a sign language interpreter by your side when you address the public, and be sure you are a good steward of resources by ensuring the interpreter is also seen by people watching or participating remotely.
8. Thou shalt not confuse medical care with providing accessibility, accommodation, power to charge assistive devices and health maintenance. Most people with disabilities require equal access, reasonable accommodations and modifications to maintain their health, safety and independence, not medical care.
9. Thou shalt never separate individuals from their service animals, assistive devices and support. Providing additional space, resources or other modifications is a legal requirement, not an optional service.
10. Thou shalt not use federal funds without meeting the requirement for providing equal physical, program and effective communication access. This obligation applies to every federal dollar and includes all funds used, distributed, contracted, subcontracted, granted or sub-granted.
11. Thou shalt ALWAYS provide equal access and meet non-discrimination requirements before, during and after disasters. These are legal civil rights obligations. There are no waivers or loopholes to these obligations in a disaster.
12. Thou shalt not use “special needs” or other access and functional needs specific registries. Most people are not waiting at home for a disaster and are just as likely to be away from home when a disaster strikes. Registries are ineffective, expensive, impossible to maintain, and they give registrants a false sense that the government will come to get them or restore their power first in an emergency. Registries also give responders and public safety officials a false sense that they are “ready”. Instead, use your resources for whole community inclusive preparedness initiatives. Partner with the community programs who are most knowledgeable about the needs of the people who live there. Paratransit, independent living centers, developmental and mental health service providers, meals on wheels, home health and aging services, special education and dialysis centers are great examples. Help them to find the resources to help your community achieve realistic whole community inclusive planning and response strategies.
13. Thou shalt not use language that drives separation of community members into groupings that belie the need for everyone to become an asset in an emergency. Special, vulnerable, at-risk and fragile are all descriptors which reinforce the incorrect belief that people with access and functional needs are a liability. Failing to plan using universal design approaches and failing to provide accommodations causes disproportionate impact to the individuals who need access and accommodation. It also hurts the whole community when limited resources such as medical care and first response resources are unnecessarily required simply because the community planned FOR and not WITH their residents.
14. Thou shalt not overlook the 2 million people with disabilities who live in institutions and nursing homes. And, if you want to use data to quantify the number of people with disabilities in the US. The US Census /American Community Survey refers to 56.7 million NON-INSTITUTIONALIZED people with disabilities. While there is much debate about the accuracy of the census numbers, these are the verified minimum numbers that should be used. PLEASE be sure to include the 2 million people with disabilities who are institutionalized whenever you use data to describe the incidence or prevalence of disability. Thus, 56.7million non-institutionalized + 2 million institutionalized = 58.7 million Americans with disabilities. Rounding this number brings the number to 59 million Americans with disabilities or 20% of the population. When planning for whole community emergency preparedness, your planning assumptions should always start with this number. Unless you have more accurate data in your state, county or city, you should always begin with a planning assumption of 20% of your population, or 1 in 5 having disabilities.
15. Thou shalt not overlook the numbers of individuals who don’t have the legal protections that people with disabilities have, but who do have similar accessibility and accommodation needs in a disaster. This includes children, older adults, people with limited English proficiency, pregnant women, people who have sustained injuries, etc. This drives emergency planning assumptions to well over 60% and many communities predict that 70% of the people they are planning for will have access and functional needs in a disaster. If you fail to plan, your plan will fail.
16. Thou shalt never forget that poverty and disability are often tightly linked. The disproportionate impact of incomplete and ineffective disaster planning is most significantly experienced by people who are poor and their communities. Capitalize on the valuable problem-solving skills you may find among people in your community who have limited resources. Find meaningful ways to welcome them and their input rather than fostering a culture that blames them for failing to take adequate responsibility for their preparedness. When everyone has the tools and skills to contribute, you may also find a substantial source for force multiplication when you need it most.
17. Thou shalt not expect people to take personal and family preparedness seriously if you are giving them impossible tasks. For example, maintaining an extra cache of medication is cost prohibitive and usually not allowed by health plans. Keeping the extra medication fresh adds to the difficulty. Rather than recommending this as a key preparedness priority, teach people how to store medical information, keep a current list of medications, know the name of their meds, doctors, pharmacy, and dosage. If the recommendation is achievable, people will be more likely to take it seriously.
18. Thou shalt not plan for people with mobility disabilities to wait in stairwells for rescue in an evacuation as the only approach. Everyone has a right to evacuate so let’s teach people how to do it safely. Failing to plan for everyone to evacuate if they choose to will not prevent people from trying and it may make evacuation harder for everyone. Furthermore, in a catastrophic event, countless multistory buildings could have people waiting in designated “areas of rescue” for first responders to evacuate them for a long time if that’s the extent of your evacuation plan. People who must wait for rescue need to have a way to communicate their needs and location, and responders need to have an achievable plan for responding.
19. Thou shalt not tell people with disabilities to plan for emergencies by relying on a buddy. If the buddy is in the bathroom, out sick, somewhere else or injured, the buddy system fails. Teach everyone how to assist each other. We teach CPR, Heimlich, “see something/say something” and other ways for anyone to be an effective first responder. Surely we can use these principles and strategies to help each other in an evacuation.
20. Thou shalt not look to the same transportation options for evacuation from multiple locations. Community organizing in advance of a disaster has identified many creative solutions for accessible evacuation transportation resources. Be sure there’s a plan for keys, gas, lift operating instructions and alternate drivers, not just accessible vehicles.
21. Thou shalt not use exercises to prove you have perfect plans. Plans are useless, planning is priceless. Exercises engage the whole community in identifying gaps and shortfalls.
22. Thou shalt never use actors or objects to portray real people and real-world scenarios. Exercises are perfect for anticipating shortfalls, allowing failures, testing solutions, building and growing relationships, solving problems and learning from lessons not simply observing problems. If your exercise is a celebration of how ready you are, you probably haven’t used your exercise well.
23. Thou shalt never assume that addressing physical access is enough to meet the access and functional needs of the people in your community. Be sure to engage experts with lived experience with mental health, aging, sensory and communication disabilities, chemical and environmental sensitivities, autism spectrum, intellectual and cognitive disabilities and chronic health conditions throughout planning and preparedness as well as recovery and mitigation.
24. Thou shalt always use disaster recovery and mitigation resources as opportunities to build back better. Funds associated with these phases of a disaster are an ideal opportunity for universal design to achieve whole community inclusive universal accessibility.
25. Thou shalt always end a good list on an odd number!