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Working with Long Term Recovery Groups and Voluntary Organizations: Lessons Learned. Laura M. Stough, Ph.D. Amy N. Sharp, Ph.D. Center on Disability and Development at Texas A&M University. National Headlines.

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slide1

Working with Long Term Recovery

Groups and Voluntary Organizations:

Lessons Learned

Laura M. Stough, Ph.D.

Amy N. Sharp, Ph.D.

Center on Disability and Development

at Texas A&M University

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National Headlines

http://www.editorandpublisher.com/eandp/photos/2006/01/W2/EyesOfTheStorm_XL.jpg; http://img.timeinc.net/time/photoessays/hurricane_rita_eye/images/splash.jpg; http://www.geofffox.com/MT/images/times-picayune-sunday.jpg; http://www.brendanloy.com/blog/images/times-picayune-aug29.jpg; http://www.palmbeachpost.com/news/content/news/photos/nppa_2005q3/images/BUPq305x1hm5.jpg

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Images of the Aftermath

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

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Images of the Aftermath

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

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Images of the Aftermath

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

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

what do we know about the experiences of people with cognitive disabilities in disaster situations

What do we know about the experiences of people with cognitive disabilities in disaster situations?

cognitive disabilities
Cognitive Disabilities
  • Psychological issues
  • Mental retardation
  • Developmental disabilities
  • Traumatic brain injury
  • Mental illness/emotional disturbance
  • Autism
  • Pervasive developmental delay
  • Alzheimer’s
research on cognitive disabilities
Research on Cognitive Disabilities
  • Very few evidence-based studies on disaster and disability
  • Even less research on cognitive disabilities
  • Research on cognitive disabilities usually conducted by clinical psychologists or psychiatrists
  • Theoretical approach most often used is Post Traumatic Stress Disorder (PTSD)
research on veterans
Research on Veterans
  • Murdoch, M., Van Ryn, M., Hodges, J., & Cowper, D. (2005). Mitigating effect of department of veterans affairs disability benefits for post-traumatic stress disorder on low income. Military Medicine, 170(2), 137-140.
  • Lopes Cardozo, B., Bilukha, O. O., Gotway Crawford, C. A., Shaikh, I., Wolfe, M. I., & Gerber, M. L. et al. (2004). Mental health, social functioning, and disability in postwar Afghanistan. Journal of the American Medical Association, 292(5), 575-584.
  • Ismail, K., Kent, K., Brugha, T. S., Hotopf, M., Hull, L., & Seed, P. et al. (2002). The mental health of UK gulf war veterans: Phase 2 of a two phase cohort study. British Medical Journal, 325(7364), 576-579.
ptsd and individuals with acquired disabilities
PTSD and Individuals with Acquired Disabilities
  • Mona, L. R., Cameron, R. P., Lesondak, L. M., & Norris, F. H. (2000). Posttraumatic stress disorder symptomatology in men and women with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 6(1), 76-86.
  • Martz, E., & Cook, D. W. (2001). Physical impairments as risk factors for the development of posttraumatic stress disorder. Rehabilitation Counseling Bulletin, 44(4), 217-221.
abuse of children with disability
Abuse of Children with Disability
  • Westcott, H. (1991). The abuse of disabled children: A review of the literature. Child: Care, Health and Development, 17(4), 243-258.
  • Sullivan, P. M., Jones, D., Garfinkel, L., & Sobsey, D. (1993). Sexual abuse therapy for special children. Journal of Child Sexual Abuse, 2(2), 117-133.
research on pre existing psychiatric disabilities
Research on Pre-existing Psychiatric Disabilities
  • Silove, D. M. (2000). The rights of the severely mentally ill in post-conflict societies. Lancet, 355(9214), 1548-1549.
  • Pandya, A. A., & Weiden, P. J. (2001). Trauma and disaster in psychiatrically vulnerable populations. Journal of Psychiatric Practice, 7(6), 426-431.
  • Pandiani, J. A., & Banks, S. M. (2002). Terrorism and people with mental illness [letter]. Psychiatric Services, 53(11), 1475.
cognitive disabilities and ptsd
Cognitive Disabilities and PTSD
  • Mitchell, A. & Clegg, J. (2005) Is post-traumatic stress disorder a helpful concept for adults with intellectual disability. Journal of Intellectual Disability Research, 49(7), 552-559.
  • Doyle, C., & Mitchell, D. (2003). Post-traumatic stress disorder and people with learning disabilities: a literature based discussion. Journal of Learning Disabilities, 7(1), 23-33.
lessons learned
Lessons Learned…
  • Research on various cognitive disabilities is extremely limited
  • Focuses on trauma following war, abuse, or disaster
  • Disability can be the result of war, abuse, or disaster
  • Some work on preexisting mental illnesses and disaster (Carol North)
evidence based approaches from natural hazards researchers
Evidence-Based Approaches from Natural Hazards Researchers
  • Social vulnerabilities (e.g. Peacock, Lindell, & Phillips) on groups found to be at greater risk for affect and slower to recover from disaster including:
    • Families living in poverty
    • Ethnic minority groups
    • Female head of household families
    • Elderly families
lesson learned
Lesson Learned…
  • Poverty heavily affects both what groups are affected by disaster and the extent to which they are affected
other approaches
Other Approaches…
  • Deterioration of social networks and resources (North & Kaniasty)
    • We can reframe this theory as a loss of formal and informal supports in the disability community
  • Resurrection of the case management model as a proposed vehicle through which services are coordinated and provided
lessons learned about what these bodies of research do not tell us
Lessons learned about what these bodies of research do not tell us…
  • Pre and post data on the effects of disaster on individuals with disabilities and their families
  • A psychosocial narrative of experiences of individuals with disabilities during and following disaster
  • Epidemiology of mortality, survivability, and psychological affects of disaster
  • Evidence-based data on the supports that are most effective for individuals with disabilities
disaster related projects
Disaster-Related Projects

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

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

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

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Recovery Efforts

From top left clockwise: http://www.completessl.com/images/other/katrina2.gif; http://www.disabilityfunders.org/images/logo04-500.gif; http://tvworldwide.com/events/nod/051005/images/press_image.jpg; http://www.democrats.org/files/img/20051003_katrinaRA-btn.jpg; http://www.dhh.louisiana.gov/offices/images/imgs-77/lagovkatrina.jpg; http://www.rescare.com/web/main/ResCareReliefSm.gif; http://katrinadisability.info/images/ideas.jpeg; background: http://www.michigan.gov/images/hurricane_135421_7.jpg.

collaboration with non profits and other organizations
Collaboration with Non Profits and other Organizations
  • US Peace Corps / Crisis Corps
  • National VOAD Conference in North Carolina
  • Central Texas VOAD
  • Texas Interagency-Interfaith Disaster Response
  • UMCOR Disaster Response
  • Katrina Aid Today Case Managers
  • Working Conference on Emergency Preparedness for Individuals with Disabilities and the Elderly
  • Protect Texas Volunteers
lesson learned1
Lesson learned…

Infiltration!

education and training
Education and Training
  • Provide expertise and resources for County Extension Agents
  • Online training through the Texas Extension Disaster Education Network
  • Develop modules for use in training of Emergency Managers at Texas A&M’s “Disaster City”, Texas Task Force One
  • Center for Homeland Security Studies at Texas A&M
lesson learned2
Lesson learned…

Translation!

We must learn the language of the existing emergency management system including its-

-organizational structure

-positions and their functions

-terminology

long term recovery
Long Term Recovery
  • Led by Voluntary Organizations Active in Disaster (VOADs)
  • Part of the National Emergency Management Plan
  • Lead agency for a particular disaster is appointed by the local VOAD
  • Most organizations are faith-based
  • Organizations have traditions of specialization
katrina aid today a national case management consortium

Katrina Aid TodayA National Case Management Consortium

Implemented by UMCOR and Consortium Partners to Assist Katrina-Displaced Persons

KatrinaAidToday.org

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Goal
  • UMCOR, in cooperation with FEMA, formed a Consortium as lead agency
  • The consortium, Katrina Aid Today, includes 9 members to provide case management
  • Cost: $66 million
  • Time: 24 months
lesson learned3
Lesson Learned:

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

The Journey is Just a Little Different

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Project REDD:

Research and Education on Disability and Disaster

At the

Center for Disability and Development

at

Texas A&M University

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