Laura M. Stough, Ph.D.

Amy N. Sharp, Ph.D.

Center on Disability and Development

at Texas A&M University

Working with Long Term Recovery Working with Long Term Recovery Groups and Voluntary Organizations:Groups and Voluntary Organizations:

Lessons LearnedLessons Learned

National HeadlinesNational Headlines

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Images of the Images of the AftermathAftermath

http://www.gov.state.la.us/assets/images/photogallery/Katrina/8.28.07.jpg; http://www.usace.army.mil/katrina-images/DSC_0006.JPG

Images of the Images of the AftermathAftermath

Images of the Images of the AftermathAftermath

Photos from: http://www.nod.org/katrinaphotos/katrina9.jpg

Images of the Images of the AftermathAftermath

A rescuer carries a young man who is unable to walk to safety.

Deaf section for Hurricane Katrina evacuees at the Houston Astrodome. (Houston, TX., 9/10/2005 -- FEMA photo/Andrea Booher)

What do we know about What do we know about the experiences of people the experiences of people with cognitive disabilities with cognitive disabilities

in disaster situations?in disaster situations?

Cognitive DisabilitiesCognitive Disabilities• Psychological issuesPsychological issues

• Mental retardation Mental retardation

• Developmental disabilitiesDevelopmental disabilities

• Traumatic brain injuryTraumatic brain injury

• Mental illness/emotional disturbanceMental illness/emotional disturbance

• AutismAutism

• Pervasive developmental delayPervasive developmental delay

• Alzheimer’sAlzheimer’s

Research on Cognitive Research on Cognitive DisabilitiesDisabilities

• Very few evidence-based studies on Very few evidence-based studies on disaster and disabilitydisaster and disability

• Even less research on cognitive Even less research on cognitive disabilitiesdisabilities

• Research on cognitive disabilities Research on cognitive disabilities usually conducted by clinical usually conducted by clinical psychologists or psychiatristspsychologists or psychiatrists

• Theoretical approach most often used is Theoretical approach most often used is Post Traumatic Stress Disorder (PTSD)Post Traumatic Stress Disorder (PTSD)

Research on VeteransResearch on Veterans

• Murdoch, M., Van Ryn, M., Hodges, J., & Cowper, D. Murdoch, M., Van Ryn, M., Hodges, J., & Cowper, D. (2005). Mitigating effect of department of veterans (2005). Mitigating effect of department of veterans affairs disability benefits for post-traumatic stress affairs disability benefits for post-traumatic stress disorder on low income.disorder on low income. Military Medicine, 170 Military Medicine, 170(2), (2), 137-140. 137-140.

• Lopes Cardozo, B., Bilukha, O. O., Gotway Lopes Cardozo, B., Bilukha, O. O., Gotway Crawford, C. A., Shaikh, I., Wolfe, M. I., & Gerber, M. Crawford, C. A., Shaikh, I., Wolfe, M. I., & Gerber, M. L. et al. (2004). Mental health, social functioning, L. et al. (2004). Mental health, social functioning, and disability in postwar Afghanistan.and disability in postwar Afghanistan. Journal of the Journal of the American Medical Association, 292American Medical Association, 292(5), 575-584. (5), 575-584.

• Ismail, K., Kent, K., Brugha, T. S., Hotopf, M., Hull, Ismail, K., Kent, K., Brugha, T. S., Hotopf, M., Hull, L., & Seed, P. et al. (2002). The mental health of UK L., & Seed, P. et al. (2002). The mental health of UK gulf war veterans: Phase 2 of a two phase cohort gulf war veterans: Phase 2 of a two phase cohort study.study. British Medical Journal, 325 British Medical Journal, 325(7364), 576-579. (7364), 576-579.

PTSD and Individuals with PTSD and Individuals with Acquired DisabilitiesAcquired Disabilities

• Mona, L. R., Cameron, R. P., Lesondak, L. M., & Mona, L. R., Cameron, R. P., Lesondak, L. M., & Norris, F. H. (2000). Norris, F. H. (2000). Posttraumatic stress Posttraumatic stress disorder symptomatology in men and women disorder symptomatology in men and women with spinal cord injury.with spinal cord injury. Topics in Spinal Cord Topics in Spinal Cord Injury Rehabilitation, 6Injury Rehabilitation, 6(1), 76-86. (1), 76-86.

• Martz, E., & Cook, D. W. (2001). Physical Martz, E., & Cook, D. W. (2001). Physical impairments as risk factors for the impairments as risk factors for the development of posttraumatic stress disorder.development of posttraumatic stress disorder. Rehabilitation Counseling Bulletin, 44Rehabilitation Counseling Bulletin, 44(4), 217-(4), 217-221. 221.

Abuse of Children with Abuse of Children with Disability Disability

• Westcott, H. (1991). The abuse of Westcott, H. (1991). The abuse of disabled children: A review of the disabled children: A review of the literature.literature. Child: Care, Health and Child: Care, Health and Development, 17Development, 17(4), 243-258. (4), 243-258.

• Sullivan, P. M., Jones, D., Garfinkel, Sullivan, P. M., Jones, D., Garfinkel, L., & Sobsey, D. (1993). L., & Sobsey, D. (1993). Sexual abuse Sexual abuse therapy for special children.therapy for special children. Journal Journal of Child Sexual Abuse, 2of Child Sexual Abuse, 2(2), 117-133. (2), 117-133.

Research on Pre-existing Research on Pre-existing Psychiatric DisabilitiesPsychiatric Disabilities

• Silove, D. M. (2000). The rights of the Silove, D. M. (2000). The rights of the severely mentally ill in post-conflict severely mentally ill in post-conflict societies.societies. Lancet, 355 Lancet, 355(9214), 1548-1549. (9214), 1548-1549.

• Pandya, A. A., & Weiden, P. J. (2001). Pandya, A. A., & Weiden, P. J. (2001). Trauma and disaster in psychiatrically Trauma and disaster in psychiatrically vulnerable populations.vulnerable populations. Journal of Journal of Psychiatric Practice, 7Psychiatric Practice, 7(6), 426-431. (6), 426-431.

• Pandiani, J. A., & Banks, S. M. (2002). Pandiani, J. A., & Banks, S. M. (2002). Terrorism and people with mental illness Terrorism and people with mental illness [letter].[letter]. Psychiatric Services, 53 Psychiatric Services, 53(11), 1475. (11), 1475.

Cognitive Disabilities and Cognitive Disabilities and PTSDPTSD• Mitchell, A. & Clegg, J. (2005) Is post-Mitchell, A. & Clegg, J. (2005) Is post-

traumatic stress disorder a helpful concept traumatic stress disorder a helpful concept for adults with intellectual disability. for adults with intellectual disability. Journal Journal of Intellectual Disability Research, 49of Intellectual Disability Research, 49(7), (7), 552-559.552-559.

• Doyle, C., & Mitchell, D. (2003). Post-Doyle, C., & Mitchell, D. (2003). Post-traumatic stress disorder and people with traumatic stress disorder and people with learning disabilities: a literature based learning disabilities: a literature based discussion. discussion. Journal of Learning Disabilities, Journal of Learning Disabilities, 77(1), 23-33. (1), 23-33.

Lessons Learned…Lessons Learned…

• Research on various cognitive Research on various cognitive disabilities is extremely limiteddisabilities is extremely limited

• Focuses on trauma following war, Focuses on trauma following war, abuse, or disasterabuse, or disaster

• Disability can be the Disability can be the resultresult of war, of war, abuse, or disasterabuse, or disaster

• Some work on preexisting mental Some work on preexisting mental illnesses and disaster (Carol North)illnesses and disaster (Carol North)

Evidence-Based Approaches Evidence-Based Approaches from Natural Hazards from Natural Hazards ResearchersResearchers• Social vulnerabilities (e.g. Peacock, Social vulnerabilities (e.g. Peacock,

Lindell, & Phillips) on groups found to Lindell, & Phillips) on groups found to be at greater risk for affect and slower be at greater risk for affect and slower to recover from disaster including:to recover from disaster including:– Families living in povertyFamilies living in poverty– Ethnic minority groupsEthnic minority groups– Female head of household familiesFemale head of household families– Elderly familiesElderly families

Lesson Learned…Lesson Learned…

• Poverty heavily affects both what Poverty heavily affects both what groups are affected by disaster and groups are affected by disaster and the extent to which they are affectedthe extent to which they are affected

Other Approaches…Other Approaches…

• Deterioration of social networks and Deterioration of social networks and resources (North & Kaniasty)resources (North & Kaniasty)– We can reframe this theory as a loss of We can reframe this theory as a loss of

formal and informal supports in the formal and informal supports in the disability communitydisability community

• Resurrection of the case Resurrection of the case management model as a proposed management model as a proposed vehicle through which services are vehicle through which services are coordinated and providedcoordinated and provided

Lessons learned about what Lessons learned about what these bodies of research do these bodies of research do not tell us…not tell us…• Pre and post data on the effects of disaster on Pre and post data on the effects of disaster on

individuals with disabilities and their familiesindividuals with disabilities and their families

• A psychosocial narrative of experiences of A psychosocial narrative of experiences of individuals with disabilities during and individuals with disabilities during and following disasterfollowing disaster

• Epidemiology of mortality, survivability, and Epidemiology of mortality, survivability, and psychological affects of disasterpsychological affects of disaster

• Evidence-based data on the supports that are Evidence-based data on the supports that are most effective for individuals with disabilitiesmost effective for individuals with disabilities

CDD PartnersCDD Partners

Disaster-Related ProjectsDisaster-Related Projects

• Evaluation design for the National Evaluation design for the National Disability Rights Network as part of the Disability Rights Network as part of the Katrina Aid Today case management Katrina Aid Today case management consortiumconsortium

• Project design for the Texas Project design for the Texas Interagency Interfaith Disaster Interagency Interfaith Disaster Recovery Case Management ProjectRecovery Case Management Project

• Evaluation design for UMCOR’s Katrina Evaluation design for UMCOR’s Katrina Aid Today mid-point evaluationAid Today mid-point evaluation

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Recovery EffortsRecovery Efforts

Collaboration with Non Profits Collaboration with Non Profits and other Organizationsand other Organizations• US Peace Corps / Crisis CorpsUS Peace Corps / Crisis Corps• National VOAD Conference in North CarolinaNational VOAD Conference in North Carolina• Central Texas VOADCentral Texas VOAD• Texas Interagency-Interfaith Disaster Texas Interagency-Interfaith Disaster

ResponseResponse• UMCOR Disaster Response UMCOR Disaster Response • Katrina Aid Today Case ManagersKatrina Aid Today Case Managers• Working Conference on Emergency Working Conference on Emergency

Preparedness for Individuals with Preparedness for Individuals with Disabilities and the ElderlyDisabilities and the Elderly

• Protect Texas VolunteersProtect Texas Volunteers

Lesson learned…Lesson learned…

Infiltration!Infiltration!

Education and TrainingEducation and Training

•Provide expertise and resources for Provide expertise and resources for County Extension AgentsCounty Extension Agents

•Online training through the Texas Online training through the Texas Extension Disaster Education NetworkExtension Disaster Education Network

•Develop modules for use in training of Develop modules for use in training of Emergency Managers at Texas A&M’s Emergency Managers at Texas A&M’s “Disaster City”, Texas Task Force One“Disaster City”, Texas Task Force One

•Center for Homeland Security Studies Center for Homeland Security Studies at Texas A&M at Texas A&M

Lesson learned…Lesson learned…

Translation!Translation!We must learn the language of the We must learn the language of the

existing emergency management existing emergency management system including its-system including its-

-organizational structure-organizational structure-positions and their functions-positions and their functions-terminology-terminology

Long Term RecoveryLong Term Recovery

• Led by Voluntary Organizations Active in Led by Voluntary Organizations Active in Disaster (VOADs)Disaster (VOADs)

• Part of the National Emergency Part of the National Emergency Management PlanManagement Plan

• Lead agency for a particular disaster is Lead agency for a particular disaster is appointed by the local VOADappointed by the local VOAD

• Most organizations are faith-basedMost organizations are faith-based

• Organizations have traditions of Organizations have traditions of specializationspecialization

Katrina Aid TodayKatrina Aid TodayA National Case Management ConsortiumA National Case Management Consortium

Implemented by UMCOR and Implemented by UMCOR and Consortium Partners to Assist Consortium Partners to Assist

Katrina-Displaced PersonsKatrina-Displaced PersonsKatrinaAidToday.orgKatrinaAidToday.org

GoalGoal

• UMCOR, in cooperation with FEMA, UMCOR, in cooperation with FEMA, formed a Consortium as lead agencyformed a Consortium as lead agency

• The consortium, Katrina Aid Today, The consortium, Katrina Aid Today, includes 9 members to provide case includes 9 members to provide case managementmanagement

• Cost: $66 millionCost: $66 million

• Time: 24 monthsTime: 24 months

Katrina Aid Today-National Case Katrina Aid Today-National Case Management ConsortiumManagement ConsortiumSummary Chart for KAT Members by StateSummary Chart for KAT Members by State

# Organization TX LA MS AL AR CACO FL GA IL MO NC NJ NY TN MI DC

1 VOA 1 1 1 1 1 1

2 ERD 1

3 TOH 1

4 NDRN 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1

6 CCUSA 1 1 1 1 1 1 1 1 1 1 1 1

7 LDR 1 1 1 1 1 1 1

8 BPSOS 1 1 1 1 1 1 1

9 TSA 1 1 1 1 1 1 1 1 1 1 1 1 1 1

10 SVDP 1 1 1 1 1 1 1 1 1 1 1TOTAL 7 8 7 5 3 6 3 4 5 3 3 3 4 3 4 4 4

VOA= Volunteers of AmericaERD= Episcopal Relief and DevelopmentTOH= The Odyssey HouseNDRN= The National Disability Rights NetworkCCUSA= Catholic Charities USALDR= Lutheran Disaster ResponseBPSOS= Boat People SOSTSA= The Salvation ArmySVDP= The National Council of the St. Vincent DePaul Society

Lesson Learned:Lesson Learned:

The primary long term recovery goals The primary long term recovery goals are the same for families with and are the same for families with and without disabilities…without disabilities…

The Journey is Just a Little DifferentThe Journey is Just a Little Different

Photo by Kendall Kessel; April 2006

Photo by Kendall Kessel; April 2006

Project Project REDD:REDD:Research and Education on Research and Education on

Disability and DisasterDisability and Disaster

At the At the

Center for Disability and Development Center for Disability and Development

at at

Texas A&M UniversityTexas A&M University