1. Disaster Preparedness and Response for Persons with Mobility Impairments: Results of the Nobody Left Behind Project Michael H. Fox, Sc.D., Glen W. White, Ph.D., Catherine Rooney, M.A., Jennifer Rowland, Ph.D., P.T. Research and Training Center on Independent Living at the University of Kansas Governor’s Public Health Conference Wichita, Kansas April 11, 2006

2. Nobody Left Behind http://www.nobodyleftbehind2.org Three year grant, TS#-08040, awarded the KU RTC/IL by the Association for Teachers of Preventive Medicine and the Centers for Disease Control and Prevention Glen White, Ph.D., KU, P.I. Michael Fox, Sc.D., KUMC, Co-P.I. October, 2002 – September, 2005 AIM: To understand county level disaster preparedness and response around needs of persons with mobility impairments

3. Persons with Disabilities in the U.S.  50 million people with a self reported disability represent 19% of the 257 million people > age 5 in the civilian non-institutionalized U.S. population Within this population, Census 2000 found:  9.3 million Americans with a sensory disability involving sight or hearing.  21.2 million with a condition limiting basic physical activities, such as walking, climbing stairs, reaching, lifting, or carrying.  18.2 million of those 16 and older with a condition that made it difficult to go outside the home.

4. Nobody Left Behind The Nature of the Problem  Typically, disaster preparedness and emergency response systems are designed for non-disabled persons, for whom escape or rescue involves walking or running.  In addition, many plans do not appear to specifically address the transition needs back to pre-disaster conditions that are required for persons with mobility impairments.

5. The True Scope of the Issue The True Scope of the Issue  90% of presidential declared disasters result from natural phenomena in which flooding was a major component  Annually, the U.S. averages 100,000 thunderstorms  Galveston Texas hurricane in 1900 killed more than 6,000. Death toll from Katrina still unknown, but exceeds 2,000.  Average of 22 “killer tornados” each year.  About 13,000 earthquakes of various magnitudes in the U.S. each year

6. Katrina Federal Disaster Funds - $62.5 Billion Washington Post, 9/9,2005

7. Cost to People with Disabilities

8. Special Needs Assessment 4 Katrina (SNAKE Teams) – National Organization on Disability (NOD)  Recommendations –Disability and aging organizations involved in the Katrina response effort report their budgets are depleted. –No use or under-use of disability and aging organizations –Need for participation of disability groups in planning process –Emergency information needs to be in accessible format

9. Nobody Left Behind Research Activities Overview Focus Area #1   County Programs, Policy, and Practice Focus Area #2   Assessing Risk Focus Area #3   Assurance and Policy Development

10. Objective: To determine whether counties that have experienced a disaster during 1998 - 2003 have systems of workplace, home, and community disaster preparedness and emergency response in place for residents with mobility impairments. Focus Area #1 COUNTY PROGRAMS, POLICY, AND PRACTICE

11. Research Questions :  Have disasters facilitated changes in disaster preparedness and emergency response policies and practices for persons with mobility impairments? If so, how?  Has the disaster preparedness and emergency response planning process included community stakeholders representing people with disabilities? If so, what has been their involvement? With what outcomes? Focus Area #1 COUNTY PROGRAMS, POLICY, AND PRACTICE

12. Objective: To evaluate surveillance systems in place at the county level that can identify morbidity and mortality frequency and prevalence for persons with mobility impairments exposed to a disaster Focus Area #2 ASSESSING RISK

13. Research Questions:  Are counties able to assess prevalence of persons with mobility impairments who reside or work in their jurisdictions and are at risk of disaster exposure (calculating the denominator)? Focus Area #2 ASSESSING RISK

14. Research Questions (continued):  Are counties able to determine how many persons with mobility impairments are affected by disasters?  Among counties that have surveillance systems in place, what are prevalence rates of disaster exposure for persons with mobility impairments, and what factors appear to influence these rates? Focus Area #2 ASSESSING RISK

15. Objective: To recommend modifications to county disaster coordinating agencies to address the health, safety, and survival needs of people with mobility impairments Focus Area #3 ASSURANCE AND POLICY DEVELOPMENT

16. Research Questions:  What surveillance systems appear most effective in assessing risk for people with mobility impairments exposed to disasters?  How can counties use surveillance systems to better manage their risk for persons with mobility impairments? Focus Area #3 ASSURANCE AND POLICY DEVELOPMENT

17. Research Questions (continued):  What county policies, practices, or programs are exemplars of best practices that can be emulated by counties around the U.S.?  How can these policies, practices, and programs be incorporated in county disaster plans? Focus Area #3 ASSURANCE AND POLICY DEVELOPMENT

18. Nobody Left Behind- Methods  Identify Federal Emergency Management Agency (FEMA) declared disasters between 1998 - 2003  Select a random sample of 30 counties or equivalent units (i.e., boroughs, reservations, etc.) across each of the ten federal regions  Interview these county emergency managers  Evaluate their disaster plans in place at time of occurrence and more recently for actions targeting persons with mobility disabilities  With assistance of national advisory panel, identify best practices  Administer on-line consumer survey

19. Nobody Left Behind Methods What did we ask? Examples of survey questions: –“Does your current emergency management plan have a protocol to assist people with mobility impairments during an emergency?” –“To your knowledge, were people with mobility impairments included in the process of developing these protocols?” –“If no written formal protocols exist to assist people with mobility impairments, to your knowledge what do emergency services personnel do to assist people with mobility impairments during an emergency? “

20. Representative County Selection Selection of state level disaster occurrences so that each of the ten federal regions is represented: Connecticut, Maine, Massachusetts, New Hampshire, REGION I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont. Rhode Island, Vermont. REGION II: New York, New Jersey, Puerto Rico, Virgin Islands. REGION III: Delaware, Maryland, Pennsylvania, Virginia, West Virginia, District of Columbia. Virginia, District of Columbia. REGION IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee. North Carolina, South Carolina, Tennessee. REGION V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin. Wisconsin. REGION VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas. REGION VII: Iowa, Kansas, Missouri, Nebraska. REGION VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming. Utah, Wyoming. REGION IX: Arizona, California, Hawaii, Nevada. REGION X: Alaska, Oregon, Washington, Idaho.

22. Summary Research Tables Corresponding to Research Questions for Nobody Left Behind

23. Research Questions 1: Have disasters facilitated change for people with mobility impairments? Table 1. Reasons for Modifying County Disaster Plans Using Chi-squared tests, none of these 2x2 relationships are statistically significant N=30 Revisions prompted by disaster? Revisions prompted by people with disabilities? Revisions prompted by federal mandates? Revisions prompted by other concerns? County disaster plan revised since disaster? Yes % No % Yes % No % Yes % No % Yes % No % Yes (n=29)27.672.46.993.158.641.46.993.1 No (n=1)0.01000.01000.01000.0100

24. Research Questions 2: Were people with disabilities included in the planning process?  Four of the six best practice sites had people with disabilities included in the process. This question was only answered for six counties engaged in the planning process (Question #14)  Of the total survey only 4 out of 30 sites (13%) had people with disabilities included in the disaster planning process

25. Research Question 3 Are sites able to assess prevalence based upon adequate surveillance?

26. Table 2. Reported Surveillance of Counties Experiencing Disasters # CountiesFrequenciesDataValidity MeasureCategoryCount # people with mobility impairments in county 13 < 754(13%) Database-5 Census-3 Estimate-5 Good Fair Poor 300-4002 (7%) 3,000-10,0006(20%) >10,0001(3%) # persons injured in disaster30 None27(90%) <1001(3%) 100-3001(3%) 10,0001(3%) # persons killed in disaster30 None26(87%) 1-53(10%) 2,7491(3%) # persons with mobility impairments killed 30 None28(93%) 11(3%) Unknown1(3%) # persons with mobility impairments rescued 30 None17(57%) 2-154(13%) 25-1004(13%) >1005(16%) Unknown1(3%)

27. Research Questions 4 & 5: Were surveillance systems in place that allowed estimates of prevalence of people with mobility impairments at risk in a disaster?  No way to determine prevalence rates based upon surveillance systems in place.  However, we may want to test this further with our site in Coffey County. Where there are accurate voluntary data registries, this measure could be possible.

28. Research Question 6: Surveillance systems that appear most effective – possible “best practices.” Six counties* identified as possible “best practices” (out of 30) based upon two criteria: 1.Having in place guidelines for persons with disabilities; and 2.Identifying operating procedures in place that follow the guidelines * Best practice sites included the following counties/jurisdictions: Dubuque County, Iowa; Brooklyn-New York City, New York; Coffey County, Iowa: Maricopa County, Arizona; Norton City, Virginia; Lincoln County, Nebraska.

29. Disaster County CharacteristicBest Practice Site (6) Other Disaster Site (24) Significance, p-value Mean Total Population571,266217,711.285 Area in square miles2,2482,436.932 Persons per square miles2051,783.575 % urban area6758.721 % White9176.097 Median household income$36,577$38,914.568 % above median income3329.849 % below poverty1314.610 % with Center for Independent Living5063.429 % persons with physical disability > 58.49.7.392 % people with disabilities 5-64 years old5.17.2.141 % people with disabilities >64 years old29.130.7.551 %t with employee who took FEMA course1742.271 % knowing how many people with disabilities live within district 10029.001 Table 3. Differences Between Disaster County Sites Identified as Best Practices and All Other Sites All mean differences were tested using ANOVA and Mann-Whitney for between group differences.

30. Nobody Left Behind What did we find out? Findings - Emergency Managers :  People with disabilities either were not represented or had minimal representation in the emergency planning process  The G197 FEMA Emergency Planning and Special Needs course pertaining to people with disabilities appears useful in increasing county awareness, though only 27% of county emergency managers reported completing it  Only 20% of the emergency managers reported having specific guidelines in place to assist people with mobility impairments during emergencies

31. Nobody Left Behind What did we find out? Findings - Emergency Managers: Surveillance efforts to identify persons with mobility impairments are weak 57% of county managers did not know how many persons with mobility limitations lived within their jurisdiction 57% of county managers did not know how many persons with mobility limitations lived within their jurisdiction Of those who claimed to know, most gave broad estimates based on unreliable sources Of those who claimed to know, most gave broad estimates based on unreliable sources 27% of counties used Census or self-reported registries to identify this figure more accurately 27% of counties used Census or self-reported registries to identify this figure more accurately

32. Nobody Left Behind What did we find out? Findings- Emergency Managers: 20% of emergency managers reported having specific guidelines in place to assist people with mobility impairments during emergencies20% of emergency managers reported having specific guidelines in place to assist people with mobility impairments during emergencies Among 24 (80%) of jurisdictions that did not:Among 24 (80%) of jurisdictions that did not: 38% (9) identified transportation accommodations that they have in place38% (9) identified transportation accommodations that they have in place 17% (4) identified accessible shelters and other educational programs that sought to reach out in some way to persons with disabilities17% (4) identified accessible shelters and other educational programs that sought to reach out in some way to persons with disabilities

33. Nobody Left Behind Where are we now? Findings of Emergency Managers:  Among jurisdictions not having specific details or guidelines in place, all (24) told us that they were important to have –“Every person’s life is important….” –“I have never seen a publication that would address many of these impairments….” –“We have it, just not in our particular plan…covered in council on aging and human resource protocols.” –“It’s a fact of life. They are out there, they need assistance, and you’ve got to address it.”

34. Nobody Left Behind What did we find out? Findings - Emergency Managers:  97% (29) of disaster management plans had been revised since the time of the county disaster we asked about  But among these, only 2 (7%) revised their plans owing to disability related concerns  Other reasons driving revisions of plans:  Annual review (72%)  Federal mandates (59%)  State mandates (24%)  Disaster (28%)  Other factors (34%)

35. Nobody Left Behind - Findings  Among jurisdictions not having specific guidelines in place (24), 5 (21%) told us they were planning to develop them. 19 (79%) told us they were not. Reasons why not: “If need is brought to our attention, we will accommodate…”“If need is brought to our attention, we will accommodate…” “We are trying to focus on special needs as a whole…”“We are trying to focus on special needs as a whole…” “It is covered in other plans…”“It is covered in other plans…” “We don’t need to be any more specific than we already are..”“We don’t need to be any more specific than we already are..” “Confidentiality issues…”; “limited local authority…”“Confidentiality issues…”; “limited local authority…” “We are overwhelmed with the demands of Homeland Security…”“We are overwhelmed with the demands of Homeland Security…” “My office is only staffed by one volunteer….”“My office is only staffed by one volunteer….”

36. Nobody Left Behind Findings  Sites reporting no specific guidelines stated the following resources were needed to develop them: 67% financial resources67% financial resources 33% knowledgeable and trained personnel33% knowledgeable and trained personnel 17% greater education for the public17% greater education for the public 25% a FEMA/State/or County mandate25% a FEMA/State/or County mandate  Among reporting sites, who told us they were planning to develop the guidelines One told us the idea originated with our interview, another started with discussions of the needs of non- English speaking residents, one mentioned particular advocate associated with universityOne told us the idea originated with our interview, another started with discussions of the needs of non- English speaking residents, one mentioned particular advocate associated with university

37. Consumer Survey Consumer Survey Do you have a personal disaster experience to share? We want to hear from persons with mobility limitations who have experienced a disaster. Please complete our on-line survey at: http://www.nobodyleftbehind2.org & Click on “Consumer Survey”

38. Nobody Left Behind Consumer Survey Findings  There are inaccessible escape routes  Few people know how to use the adaptive escape chairs for wheelchair users  There was no accessible transportation after the disaster event to get around in the community  Very slow response in helping citizens with disabilities return to their homes (e.g., rebuilding ramps, moving debris, etc.)

39. Nobody Left Behind Consumer Survey Findings Shelters, including bathrooms, were not accessible for wheelchair usersShelters, including bathrooms, were not accessible for wheelchair users During extended power outages, persons were unable to use assistive equipment and medical devicesDuring extended power outages, persons were unable to use assistive equipment and medical devices Power outages disabled elevators, forcing persons with mobility limitations to be dependent upon neighbors or emergency workersPower outages disabled elevators, forcing persons with mobility limitations to be dependent upon neighbors or emergency workers

40. Nobody Left Behind Consumer Survey Findings “It is really difficult to get the utility company to understand power is a need, if disabled.” “I ambulate with forearm crutches and my leg stamina is limited. As a social service provider in NYC, I am in tall buildings often and one in particular had an evacuation drill. There were no plans or equipment to assist me. They told me to ignore the drill. I felt very vulnerable because I attend regular work meetings in this building.”

41. Nobody Left Behind Consumer Survey Findings “I have juvenile rheumatoid arthritis and use a wheel chair. We had a bomb threat at work, which was very scary. Everyone evacuated, but I was still left on the 3 rd floor by the stairwell for the firefighters to come get me. But, no one came. Finally, I just struggled and I used pure fear to get myself down the stairs and outside. It was scary just to realize that there are not really any procedures in place to help someone like me in an emergency.”

42. Nobody Left Behind New Directions  Received $162,000 funding from the National Institute on Disability and Rehabilitation Research to conduct research on two tasks: Identify barriers and gaps that Centers for Independent Living personnel have experienced concerning people with disabilities in the recently affected hurricane areas and relocation centersIdentify barriers and gaps that Centers for Independent Living personnel have experienced concerning people with disabilities in the recently affected hurricane areas and relocation centers Identify barriers and gaps that emergency personnel have experienced concerning people with disabilities in the recently affected hurricane areas and relocation centersIdentify barriers and gaps that emergency personnel have experienced concerning people with disabilities in the recently affected hurricane areas and relocation centers

43. Current Research  Early February, 2006 –Visited with CIL staff and consumers from Southern Mississippi and visited Katrina affected areas in Gulfport and Biloxi  Late February, 2006 –Visited with CIL staff and consumers from Southern Louisiana conducting interviews in Baton Rouge and visiting Katrina affected areas around New Orleans (e.g., 9 th Ward, Arabi, St. Bernard Parrish)  March, 2006 –Visited with CIL staff in Alabama

45. Consumer Reports  Fear – Dense darkness – Safety (looters) – Unknown (where to go? What to do? When can I go back, if ever?) – What will my life be like now?

46. Consumer Reports  Resignation –The system is broken and will not help me. –There is nothing I can control or do. –I have invested my whole life in my home and now it is gone.

47. Consumer Reports  Anger –“FEMA stands for F*** Every Mississippian Again.” –The response of authorities at all levels was too little too late. –When we stayed with family after the disaster; there was lots of tension (When you going to leave?)

48. Centers for Independent Living Reports Question MS CILs S. LA CILs Anyone with DP training at your CILs? No Yes, limited Before Katrina, did your CIL have a plan to provide services in the event of a disaster? No Yes, limited Did your Center have an informal or formal relationship with first- responders before Katrina? NoNo How many PEOPLE WITH DISABILITIES from your county had to relocate following Katrina? Thou- sands 35+ K

49. Centers for Independent Living Reports Question MS CILs S. LA CILs What were your CIL’s most significant accomplishments during the shelter and recovery phase? Finding consumers; getting well over $100,000 of equipment to consumers Continuing to provide services post- Katrina Based on your Katrina experience how can CILs be more effective in helping pwd in future disasters? Train, train, train for DP; both staff and consumers; work more closely with DP specialists Locate, evacuate, pre-assess, move to CIL-contr. shelter

50. Much remains to be done…  People with disabilities must be treated as a separate group with separate needs and not combined with “special needs.” Such designations only widen disparities.  The overwhelming response of people with disabilities affected by Katrina is that they don’t want to be forgotten  Exemplary disaster preparedness and emergency response procedures and annexes need to be developed and used to help get people with disabilities out of harm’s way

51. Mission: to promote emergency preparedness inclusion, research, education, awareness and planning for people with disabilities at the local, state, and national level through a variety of means. The Consortium consists of the American Association on Health and Disability (AAHD), the University of Kansas Research and Training Center on Independent Living, and the University of New Mexico Center for Development and Disability.

52. Additional Sources of Information www.nobodyleftbehind2.org Findings submitted to: Journal of Disability Policy Studies in response to Call for Papers Disaster Preparation and Emergency Response for People with Disabilities: Research, Policy and Practice