Nobody Left Behind
Briefing Paper: Objective Three, Part 1
July 25, 2005 

Focus Area: Assurance and Policy Development Recommendations

I. Introduction

Key research findings, questions to address specific issues raised by these findings, and recommendations to answer these questions are each presented in this report, with recommendations being the centerpiece. They were developed by project advisors and consultants who are experts in their respective fields in disaster preparedness and response and/or people with disabilities, in conjunction with the research team. The objective is to assist in the development of policies and procedures to address shortcomings that exist in disaster preparedness and emergency response for persons with disabilities. Target audiences for this briefing paper are lead agencies, including Homeland Security, Federal Emergency Management Agency (FEMA), Department of Justice, state and local emergency management organizations and associations, national, state, and local organizations representing persons with disabilities, and community-based organizations that have among their clients’ people with disabilities.

II. Education and Training

Study Finding: Only 27% of the emergency managers have taken the FEMA Special Needs, G-197 course related to emergency planning and response for people with disabilities.

Question: What steps can be taken to increase participation in FEMA’s Special Needs Population courses for emergency managers?


1. Integrate the G-197 and the newly developing IS-197 (web course on disaster preparedness and response for persons with disabilities and the elderly) into the career track for emergency managers, including but not limited to adding test questions on the national examination.

2. Take the category of people with disabilities out of the definition of

“special needs” population and develop targeted information on people with disabilities into the basic course.

3. Do away with the “special needs” category altogether, and incorporate into the basic training the disaster-related information necessary to serve the entire population.

Question: What steps can be taken to increase participation in education and training in this field for first responders and others?


1. Develop within the two week residency course a component on persons with disabilities and get it introduced into the Fire Academy’s career track.

2. Incorporate people with disabilities into the actual training scenarios for first responders.

3. Integrate emergency management systems with healthcare providers and other community service providers, such as Visiting Nurses, home health agencies, Area Agencies on Aging, in relationship to planning and response for people with disabilities.

4. Create fact sheets for landlords, emergency services planners, and first responders that will help them know what to do to assist people with mobility impairments.

5. Develop an educational program for direct care staff, such as personal care attendants, home health aids and nurses, to act as intermediaries for disaster planning and response and their clients.

6. Train organizations representing persons with disabilities and persons with disabilities to actively participate in their own emergency preparedness, and advocate for change at the personal and systems level.

7. Teach consumers with disabilities to be more proactive and prepared for disasters and emergencies.

III. Surveillance Systems

Study Findings: Among the emergency managers, 57% do not know how many people with mobility impairments live within their jurisdiction. Forty-three percent of the emergency managers use some type of data source as a surveillance mechanism for planning and/or providing services. Seventeen percent use database systems that were primarily self-report registries, another 17% use an estimate, and 10% use census data.

Question: What steps can be taken to increase participation in, or to create or modify local surveillance systems?


1. Develop local systems that require agencies to alert designated people in the event of an emergency with high technology, such as reverse 911.

2. Provide the resources and other support necessary to develop local registries to identify persons with mobility impairments and other disabilities who need assistance during a disaster or emergency with medical needs, transportation, sheltering, evacuating, and returning to their homes.

3. Develop means to encourage self-identification, as this is appropriate and necessary for people with disabilities. In addition, ensure that there are ways to systematically and regularly update registries or self-reporting.

4. Require an annual review of prevalence and location to keep registries updated.

5. Utilize community-based organizations to reach people with disabilities such as centers for independent living (CILs), developmental disability organizations, home health agencies, and so on. Such organizations could assist in reaching people with disabilities and encouraging self-identification with emergency management and response organizations.

6. Ask CILs and other community-based organizations to impart information to people with disabilities, and to encourage people with disabilities to develop individual plans and to become active in the community. This will encourage the community to develop more effective and inclusive emergency and evacuation plans at worksites, public buildings, and residential settings.

7. Utilize health fairs to focus on outreach and updating information.

8. Develop GIS mapping to identify where people are located and where there are concentrated numbers of people with disabilities. In addition, have the GIS mapping adopted by emergency management systems. Models cited in this area are Wilson, North Carolina and Cedar Rapids, Iowa.

9. Explore the use of a national surveillance system that may require

revising census data collection to include specific disabilities.

10. Work with state data systems, such as the state health departments’ Behavioral Risk Factor Surveillance System (BRFSS) survey to include disability data.

11. Develop contemporary structure mapping.

12. Support further research to explore the strengths and weakness of various identification systems to assist emergency managers in the selection of systems to accommodate varying assistance needs and community situations.

13. Utilize community-based organizations as intermediaries, such as home health agencies, children’s agencies, and disability specific groups between persons with disabilities in preparedness and response efforts by emergency management.

14. Define in the plan what resources and actions an intermediary agency is to contribute to preparedness and response efforts. One example is to develop a plan and commitment to utilize the agency’s accessible transportation vehicles and drivers to provide direct assistance to person with disabilities during natural and other types of emergencies.

15. Encourage Statewide Independent Living Councils (SILC) to have statements of support for the development of emergency preparedness and response plans for CILs and for appropriate resources (knowledge, training, and financial) to be appropriated to CILs for the activities.

IV. Inclusion of People with Disabilities

Study Findings: From the 18 sites (or 80%) that did not have guidelines in place to assist people with mobility impairments, only five sites (or 28%) had any plans to develop these types of specific details or guidelines in the future. No previsions are being considered to include persons with mobility impairments in these planning efforts. Only one site is considering a representative of the Mayor’s office on Americans with Disabilities (ADA) and another site a representative from the Office of Aging.

Four out of the six sites that have guidelines to assist people with disabilities consulted with advocacy organizations for seniors or people with disabilities or with a person with a disability during the planning stages.

Question: What steps can be taken to increase the role of people with mobility impairments in the planning stages on the local, state, and federal levels?


1. Stimulate interest in emergency preparedness among people with disabilities.

planning and preparedness and how to provide information to others that assist them in individual and community planning efforts.

3. Teach people with disabilities to be proactive with emergency management systems and local health providers.

4. Utilize educational information to make a shift in attitudes of people with disabilities about stigmas for not self-identifying with registries.

5. Utilize community-based organizations to get information to people with disabilities and to organizations that serve people with disabilities.

6. Encourage the Department of Justice to issue a statement on their Americans with Disabilities Act website regarding ways to reach people with disabilities to encourage self-identification in planning and communication guidelines.

7. Encourage CILs, SILCs and other organizations that serve and work with people with disabilities to have a statement to encourage consumers to participate in self-identification and individual emergency planning.

8. Encourage Local Emergency Planning Centers (LEPC) to include people with disabilities in interactions with their local emergency providers.

9. Build interaction between the LEPC, CILs, SILCs, and other community-based organizations.

V. Local Emergency Management Plans

Study Findings: Eighty percent of the sites in the study did not have guidelines or procedures in their local emergency management plan to address the needs of persons with disabilities. Only 21% had plans in place to develop such guidelines or procedures.

Question: What steps can be taken to assist with the development of guidelines and procedures in local emergency management plans?


1. Create a template annex/appendix on persons with disabilities for adoption by emergency managers.

2. If an annex/appendix approach is not used, then make reference on handling the needs of persons with disabilities in the plan on communication and warning, evacuation and transportation, sheltering, medial and health, and others sections as warranted.

3. Emergency management plans should, at a minimum, address the guidelines for Americans with Disabilities Act (ADA) pertaining to emergency management as recommended by the Department of Justice.

4. Develop model annexes/appendices for each of the populations presently referred to as “special needs” populations.

5. Encourage emergency managers to adopt the annex/appendix on persons with disabilities and the other appendices that are predominant to populations in their individual community setting.

VI. Local Emergency Management Infrastructures

Study Findings : For sites without specific guidelines to assist people with mobility impairments, the following resources were needed to develop them: 67% required financial resources, 33% required additional knowledgeable and trained personnel, and 17% need educational resources for the public and 25% require a FEMA, state or county mandate to take any action.

Recommendation: Maintain and expand the infrastructure of local emergency management operations across the country to be able to make appropriate changes to accommodate people with disabilities in their services, assure accessibility in shelters, develop special needs shelters, and develop appropriate surveillance measures.

VII. Recommendations to Expand the NLB Research Project

We propose an expansion of the NLB research project, using another grant to fund the following:

1. Train the emergency managers interviewed in the original NLB study with new training guidelines and then conduct a follow-up evaluation to determine what gets integrated into the operations.

2. Develop a best-practice appendix/annex that clearly describes how to prepare people with disabilities for emergencies and how to get them out of harm’s way in the event of a catastrophic event. Further, the appendix/annex will describe how to incorporate people with disabilities and their knowledge and experience into the overall process of emergency management.

3. Analyze the operational process of emergency management from a functional viewpoint, especially in addressing the needs of people with disabilities. Link the identified needs from this to a plan for technical assistance

4. Develop a guide to assesses community resources, and areas of safety for people with disabilities.

5. Conduct a study among first responders to determine what knowledge

they have regarding preparedness and response for people with disabilities.

6. Explore the role of CILs in local preparedness and response efforts and develop

pilot projects with CILs.

VIII. Other Recommendations

1. There is a need for future direction in:

a. Development of national standards to evaluate ease of use, function, and safety of emergency related technology, such as evacuation chairs.

b. Encouragement of the use of directional alarm system

c. Encouragement of the use of tactical and low level lighting

d. Addressing the needs for full accommodations in declared shelters for evacuees fleeing from a catastrophic event.

e. Assess the preparation and training of all personnel involved with shelters.

2. Recommend policy change in the next revision of the Uniform Fire Code to require that the structure being inspected meets specifications to accommodate people with disabilities during emergencies.

3. Encourage the New Freedom Initiative to include shelters.

4. Develop an Annex that is connected with healthcare facilities for those that live a home and those that are in congregate settings.

5. Concentrate on the contents of the plans of registered health facilities to assure that can adequately evacuate and meet the needs of residents during disasters.

* * * * *

This report was created by the Research and Training Center on Independent Living and does not necessarily reflect the views of the funder or the University of Kansas . Any use of the contents of this report should be followed by this citation: The Research and Training Center on Independent Living, The University of Kansas (2005, October 12), Nobody Left Behind: Briefing Paper: Objective Three, Part 1 Focus Area: Assurance and Policy Development Recommendations. Lawrence , KS : Nobody Left Behind staff.For more information, refer to

NLB Advisors, Consultants, and Principal Investigators

National Advisory Panel

Alan Cline, PhD
Retired, Civil Rights Program Manager
Office of Equal Rights-FEMA
Washington , D.C.  

Elizabeth Davis
Emergency Management
Special Needs Consultant
EAD Associates, LLC
Brooklyn , NY

Edwina Juillet
Fire and Life Safety for 
Persons with Disabilities
Luray , VA

Bryna Helfer , MA
Transportation Service Advisor
Federal Transit Administration   
Washington , DC

Bob Mikesic
Advocacy/ADA Coordinator
Independence, Inc.
Lawrence , KS   

Paula Phillips 
Douglas County Emergency Management
Lawrence , KS



Richard Gist, PhD
Principal Assistant to the Director
KCMO Fire Department
Kansas City , MO

June Issacson Kailes, MSW
Disability Policy Consultant

Erin E.S. Lynch, MA
Emergency Services and
Homeland Security Director
Mid America Regional Council
Kansas City , Mo

Principle Investigators


Glen W. White, PhD
Director, Research & Training Center on Independent Living, University of Kansas
Lawrence , KS

Michael H. Fox, ScD
Interim Chair, Department of Health
Policy & Management
University of Kansas Medical Center
Kansas City , MO


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