Trauma, Grief and the Social Model: Practice Guidelines for Working with Adults with Intellectual Disabilities in the Wake of Disasters
Main Article Content
Keywords
intellectual disabilities, social model, trauma
Abstract
Formulating personal needs assessments and plans for self-protection have been the recent focus of disaster preparedness manuals for individuals with intellectual disabilities and their caregivers. Interventions to address the minimization of psychological ill effects of trauma and grief in the aftermath of disasters for this population, however, remain largely unexplored. In the wake of such events, persons with intellectual disabilities require trained mental health professionals to assist them in identifying and coping with trauma exposure and its associated, often sudden losses. Intervention should be based on the unique needs of this population within the context of disaster and each individual's cognitive strengths and capacities. Coupled with reviews of research and practice in the area of disaster mental health, the social model of disability served as a foundation for the formulation of best practice guidelines for tertiary interventions with adults with intellectual disabilities. The guidelines suggest approaches that will enable professionals to identify and minimize acute and chronic responses to disasters as well as foster resilience and enhance the valuable contributions of adults with intellectual disabilities in disaster-affected communities.
References
Allen, B., & Borgen, K. (1994). Multimodal therapy for survivors of sexual abuse with developmental disabilities: An evaluation of treatment effectiveness. Sexuality and Disability, 12(3), 201-206.
Barnes, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability: A sociological introduction. Cambridge: Polity Press.
Behrman, G., & Reid, W. J. (2002). Post-trauma intervention: Basic tasks. Brief Treatment and Crisis Intervention, 2(1), 39-47.
Benson, B. (2005). Mental health. In W. M. Nehring (Ed.), Health promotion for persons with intellectual and developmental disabilities (pp. 73-86). Washington, DC: American Association on Mental Retardation.
Benson, B. A., & Valenti-Hein, D. (2001). Cognitive and social learning treatments. In A. Dosen & K. Day (Eds.), Treating mental illness and behavior disorders in children and adults with mental retardation (pp. 101-118). Washington, DC: American Psychiatric Publishing, Inc.
Bonanno, G., & Kaltman, S. (2001). The varieties of grief experience. Clinical Psychology Review, 21(5), 705-734.
Bonell-Pascual, E., Huline-Dickens, S., Hollins, S., Esterhuyzen, A., Sedgwick, P., Abdelnoor, A., & Hubert, J. (1999). Bereavement and grief in adults with learning disabilities. A follow-up study. British Journal of Psychiatry, 175, 348-350.
Borthwick-Duffy, S. A. (1994). Epidemiology and prevalence of psychopathology in people with mental retardation. Journal of Consulting and Clinical Psychology, 62(1), 17-27.
Brewin, C. R., Andrews, B., & Valentine, J. D. (2000). Meta-analysis of risk factors for posttraumatic stress disorder in trauma-exposed adults. Journal of Consulting and Clinical Psychology, 68(5), 748-766.
Briere, J., & Elliott, D. (2000). Prevalence, characteristics and long-term sequelae of natural disaster exposure in the general population. Journal of Traumatic Stress, 13(4), 661-679.
Burchardt, T. (2004). Capabilities and disability: The capabilities framework and the social model of disability. Disability and Society, 19(7), 735-751.
Burnett, P., Middleton, W., Raphael, B., Dunne, M., Moylan, A., & Marinek, N. (1994). Concepts of normal bereavement. Journal of Traumatic Stress, 7, 123-134.
Caplan, G. (1961). An approach to community mental health. New York: Grune & Stratton.
Caplan, G. (1964). Principles of preventative psychiatry. New York: Basic Books.
Carder, M. M. (1987). Journey into understanding: Mentally retarded people’s experience around death. Journal of Pastoral Care, 4, 18-31.
Clegg, J. A., & Lansdall-Welfare, R. (2003). Death, disability and dogma. Philosophy, Psychiatry, and Psychology, 10, 67–79.
Clements, P. T. (2004). Making sense of the senseless. The Journal of Psychosocial Nursing, 42(1), 6-7.
Courtois, C. A. (2004). Complex trauma, complex reactions: Assessment and treatment. Psychotherapy: Theory, Research, Practice, Training, 41(4), 412-425.
Danieli, Y., & Dingman, R. (Eds.). (2005). On the ground after September 11: Mental health responses and practical knowledge gained. New York: Haworth Maltreatment and Trauma Press.
Davis, C. G., & McKearney, J. M. (2003). How do people grow from their experience with trauma or loss? Journal of Social and Clinical Psychology, 22(5), 477-492.
Day, K. (1985). Psychiatric disorder in middle aged and the elderly mentally handicapped. British Journal of Psychiatry, 147, 665–668.
Deb, S., Matthews, T., Holt, G., & Bouras, N. (Eds.). (2001). Practice guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disability. Brighton, Great Britain: Pavilion.
Developmental Disabilities Assistance and Bill of Rights Act of 1990, Pub. L. No. 101-496, 104 Stat. 1191 (1990).
DeWolfe, D. J. (2000). Training manual for mental health and human service workers in major disasters (2nd ed., DHHS Publication No. ADM90-538). Washington, DC: U.S. Department of Health and Human Services.
Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49(7), 537-543.
Doka, K. J. (Ed.). (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Champaign, IL: Research Press.
Elklit, A., & O'Connor, M. (2005). Post-traumatic stress disorder in a Danish population of elderly bereaved. Scandinavian Journal of Psychology, 46(5), 439-445.
Eth, S., & Pynoos, R. (1985). Interaction of trauma and grief in childhood. In S. Eth & R. Pynoos (Eds.), Post-traumatic stress disorder in children (pp. 171-186). Washington, D.C.: American Psychiatric Press.
Everly, Jr., G. S., & Mitchell, J. T. (1999). Critical incident stress management (CISM): A new era and standard of care in crisis intervention. Ellicott City, MD: Chevron.
Federal Emergency Management Agency. (2000, April). FEMA and NOAA join forces to warn of the impact of climate change. Retrieved December 27, 2005, from http://www.fema.gov/news/newsrelease.fema?id=7436
Feuerstein, P. B. (2005). 911 and people with disabilities. In Y. Danieli & R. Dingman (Eds.), On the ground after September 11: Mental health responses and practical knowledge gained (pp. 89-95). New York: Haworth Maltreatment and Trauma Press.
Friedman, M. J., & Schnurr, P. (1996). Trauma, PTSD and health. NC-PTSD Clinical Quarterly, 6(4), 75-76.
Fullerton, C. S., Ursano, R. J., Kao, T., & Bharitiya, V. (1992). The chemical and biological warfare environment: Psychological responses and social support in a high stress environment. Journal of Applied Social Psychology, 22, 1608-1623.
Garbarino, J., & Brookhouse, P. (Eds.). (1987). Special children, special risks: The maltreatment of children with disabilities. New York: Aldine de Gruyter.
Ghaziuddin, M. (1988). Behavioural disorders in the mentally handicapped. The role of life events. British Journal of Psychiatry, 152, 683-686.
Gray, M. J., & Litz, B. T. (2005). Behavioral interventions for recent trauma: Empirically informed practice guidelines. Behavior Modification, 29(1), 189-215.
Harper, D. C., & Wadsworth, J. S. (1993). Grief in adults with mental retardation: Preliminary findings. Research in Developmental Disabilities, 14, 313-330.
Herman, J. (1992). Complex PTSD: A syndrome in survivors of prolonged and repeated trauma. Journal of Traumatic Stress, 5, 377-391.
Hobfoll, S. E. (2001). The influence of culture, community, and the nested-self in the stress process: Advancing conservation of resources theory. Applied Psychology: An International Review, 50(3), 337-370.
Hogan, N. S., Worden, J. W., & Schmidt, L. A. (2003). An empirical study of the proposed complicated grief disorder criteria. Omega: Journal of Death and Dying, 48(3), 263-277.
Hollins, S., & Esterhuyzen, A. (1997). Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry, 170, 497-501.
Jacobs, D., Mazure, C., & Prigerson, H. G. (2000). Diagnostic criteria for traumatic grief. Death Studies, 24, 185-199.
Jacobs, S. (1999). Traumatic grief: Diagnosis, treatment, and prevention. Philadelphia: Brunner/Mazel.
Jordan, J. R., & Neimeyer, R. A. (2003). Does grief counseling work? Death Studies, 27(9), 765-786.
Kanel, K. (2007). A guide to crisis intervention (3rd ed.). Pacific Grove, CA: Wadsworth.
Katz, C. L., Pellegrino, L., Pandya, A., Ng, A., & DeLisi, L. E. (2002). Research on psychiatric outcomes and interventions subsequent to disasters: A review of the literature. Psychiatry Research, 110(3), 201-217.
Kauffman, J. (2005). Guidebook on helping persons with mental retardation mourn. Amityville, NY: Baywood Publishing Co.
Kessler, R. C., Sonnega, A., Bromet, E., Hughes, M., & Nelson, C. B. (1995). Posttraumatic stress disorder in the National Comorbidity Survey. Archives of General Psychiatry, 52(12), 1048-1060.
Kirchner, L., & Mueth, M. (1999). Suicide in individuals with developmental disabilities. In R. Fletcher (Ed.), Therapy approaches for persons with mental retardation (pp. 127-150). Kingston, NY: The NADD Press.
Kloeppel, D. A., & Hollins, S. (1989). Double handicap: Mental retardation and death in the family. Death Studies, 13, 31-38.
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J., & Steineck, G. (2004). Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: A population-based follow-up. Psychological Medicine, 34(8), 1431-1441.
Latham, A. E., & Prigerson, H. G. (2004). Suicidality and bereavement: Complicated grief as psychiatric disorder presenting greatest risk for suicidality. Suicide and Life Threatening Behavior, 34(4), 350-362.
Lavin, C. (1989). Disenfranchised grief and the developmentally disabled. In K. J. Doka (Ed.), Disenfranchised grief: Recognizing hidden sorrow. (pp. 229-237). Lexington, MA: Lexington Books/D. C. Heath and Com.
Levitas, A. S., & Gilson, S. F. (2001). Predictable crises in the lives of people with mental retardation. Mental Health Aspects of Developmental Disabilities, 4(3), 89-100.
Li, J., Laursen, T. M., Precht, D. H., Olsen, J., & Mortensen, P. B. (2005). Hospitalization for mental illness among parents after the death of a child. New England Journal of Medicine, 352(12), 1190-1196.
Lindsay, W. R., Richardson, I., & Michie, A. M. (1989). Short-term generalised effects of relaxation training on adults with moderate and severe mental handicaps. Mental Handicap Research, 2(2), 197-206.
Lipe-Goodson, P. S., & Goebel, B. L. (1983). Perception of age and death in mentally retarded adults. Mental Retardation, 21(2), 68-75.
Luchterhand, C., & Murphy, N. (1998). Helping adults with mental retardation grieve a death loss. Philadelphia: Taylor & Francis.
Lundin, T. (1994). The treatment of acute trauma. Psychiatric Clinics of North America, 17, 385–391.
MacHale, R. (2002). An investigation of the effects of bereavement on mental health and challenging behaviour in adults with learning disability. British Journal of Learning Disabilities, 30, 113-117.
Masi, G., Brovedani, P., Mucci, M., & Favilla, L. (2002). Assessment of anxiety and depression in adolescents with mental retardation. Child Psychiatry and Human Development, 32(3), 227-237.
Matthews, L. T., & Marwit, S. J. (2004). Complicated grief and the trend toward cognitive-behavioral therapy. Death Studies, 28(9), 849-863.
Mayou, R. (2001). Prediction of psychological outcomes one year after a motor vehicle accident. American Journal of Psychiatry, 158, 1231-1238.
McCabe, M. P, Cummins, R., & Reid, S. B. (1994). An empirical study of the sexual abuse of people with intellectual disability. Sexuality and Disability, 12(4), 297-306.
McCarthy, J. (2001). Post-traumatic stress disorder in people with learning disability. Advances in Psychiatric Treatment, 7, 163-169.
McFarlane, A. C., & de Girolamo, G. (1996). The nature of traumatic stressors and the epidemiology of posttraumatic reactions. In B. A. van der Kolk, A. C. McFarlane, & L. Weisaeth (Eds.), Traumatic stress: The effects of overwhelming experience on mind, body, and society (pp. 129-154). New York: Guilford Press.
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.
Moddia, B., & Chung, M. C. (1995). Grief reactions and learning disabilities. Nursing Standard, 9(33), 38-39.
Munson, C. E. (2002). Child and adolescent needs in a time of national disaster: Perspectives for mental health professionals and parents. Brief Treatment and Crisis Intervention, 2(2), 135-151.
Nader, K. (1997). Childhood traumatic loss: The interaction of trauma and grief. In C. R. Figley, B. E. Bride, & N. Mazza, (Eds.), Death and trauma: The traumatology of grieving (pp. 17-41). London: Taylor and Francis.
Nader, K. (2001). Terrorism: September 11, 2001 trauma, grief, and recovery. Retrieved March 10, 2006, from http://www.giftfromwithin.org/pdf/firstaid.pdf.
Neimeyer, R. A. (2002). Traumatic loss and the reconstruction of meaning. Journal of Palliative Medicine, 5(6), 935-942.
Newman, E., Christopher, S. R., & Berry, J. O. (2000). Developmental disabilities, trauma exposure, and post-traumatic stress disorder. Trauma, Violence and Abuse, 1(2), 154-170.
Nezu, C. M., Nezu, A. M., & Arean, P. (1991). Assertiveness and problem-solving training for mildly mentally retarded persons with dual diagnoses. Research in Developmental Disabilities, 12, 371-386.
Norris, F. H., Friedman, M. J., Watson, P. J., Byrne, C. M., Diaz, E., & Kaniasty, K. (2002). 60,000 disaster victims speak: Part I, an empirical review of the literature, 1981-2001. Psychiatry, 65(3), 207-239.
Nugent, J. (1997). Handbook on dual diagnosis: Supporting people with a developmental disability and a mental health problem. Evergreen, CO: Mariah Management.
Oliver, M. (1995). Counseling disabled people: A counselor’s perspective. Disability and Society, 10, 261-279.
Oswin, M. (1985). Bereavement. In M. Kraft, J. Bicknell, & S. Hollins (Eds.), Mental handicap: A multidisciplinary approach (pp. 197-205). Ballierre, England: Tindall.
Paton, D., & Johnston, D. (2001). Disasters and communities: Vulnerability, resilience and preparedness. Disaster Prevention and Management, 10(4), 270-277.
Powell, S., Rosner, R., Butollo, W., Tedeschi, R. G., & Calhoun, L. G. (2003). Posttraumatic growth after war: A study with former refugees and displaced people in Sarajevo. Journal of Clinical Psychology, 59(1), 71-83.
Prigerson, H., & Jacobs, S. (2001). Traumatic grief as a distinct disorder: A rationale, consensus criteria, and a preliminary empirical test. In M. S. Stroebe, R. O. Hansson, W. Stroebe & H. Schut. (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 613-645). Washington, DC: American Psychological Association.
Prigerson, H., Bierhals, A., Kasl, S., Reynolds, C., Shear, M., Newsom, J., & Jacobs, S. (1996). Complicated grief as a disorder distinct from bereavement-related depression and anxiety: A replication study. American Journal of Psychiatry, 153, 1484-1486.
Prigerson, H., Shear, M., Jacobs, S., Reynolds, C., Maciejewski, P., Davidson, J., et al (1999). Consensus criteria for traumatic grief: A preliminary empirical test. British Journal of Psychiatry, 174, 67-73.
Prout, H. T., & Cale, R. L. (1994). Individual counseling approaches. In D. C. Strohmer & H. T. Prout (Eds.), Counseling & psychotherapy with persons with mental retardation and borderline intelligence (pp. 103-141). Hoboken, NJ: John Wiley & Sons, Inc.
Razza, N. J., & Tomasulo, D. J. (2005). Healing trauma: The power of group treatment for people with intellectual disabilities. Washington, DC: American Psychological Association.
Read, S. (2001). A year in the life of a bereavement counseling and support service for people with learning disabilities. Journal of Learning Disabilities, 5(1), 19-33.
Reeve, D. (2000). Oppression within the counseling room. Disability and Society, 15(4), 669-682.
Regehr, C., & Sussman, T. (2004). Intersections between grief and trauma: Toward an empirically based model for treating traumatic grief. Brief Treatment and Crisis Intervention, 4(3), 289-309.
Reiss, S., Levitan, G. W., & Szyszko, J. (1982). Emotional disturbance and mental retardation: Diagnostic overshadowing. American Journal of Mental Deficiency, 86(6), 567-574.
Roberts, A. R. (2005). Bridging the past and present to the future of crisis intervention and crisis management. In A. R. Roberts (Ed.), Crisis intervention handbook: Assessment, treatment, and research (3rd ed.)(pp. 3–34). New York: Oxford University Press.
Roberts, A. R. (Ed.). (2005a). Crisis intervention handbook: Assessment, treatment, and research (3rd ed.). New York: Oxford University Press.
Rubin, S. S., Malkinson, R., & Witztum, E. (2003). Trauma and bereavement: Conceptual and clinical issues revolving around relationships. Death Studies, 27(8), 667-690.
Rundell, J. R., Ursano, R. J., Holloway, H. C., & Silberman, E. K. (1989). Psychiatric responses to trauma. Hospital and Community Psychiatry, 40(10), 68-74.
Rush, A. J., & Frances, A. (2000). Expert consensus guideline series: Treatment of psychiatric and behavioral problems in mental retardation. American Journal on Mental Retardation, 105(3), 159-226.
Sanders, S., Bowie, S. L., & Bowie, Y. D. (2003). Lessons learned on forced relocation of older adults: The impact of hurricane Andrew on health, mental health, and social support of public housing recipients. Journal of Gerontological Social Work, 40(4), 23-35.
Servaty-Seib, H. L. (2004). Connections between counseling theories and current theories of grief and mourning. Journal of Mental Health Counseling, 26(2), 125-145.
Shear, K., Frank, E., Houck, P. R., & Reynolds, C. F. (2005). Treatment of complicated grief: A randomized controlled trial. Journal of the American Medical Association, 293(21), 2601-2608.
Singh, I., Jawed, S. H., & Wilson, S. (1988). Mania following bereavement in a mentally handicapped man. British Journal of Psychiatry, 152, 866–867.
Sobsey, R. (2005). Violence. In W. M. Nehring (Ed.), Health promotion for persons with intellectual and developmental disabilities (pp. 205-234). Washington, DC: American Association on Mental Retardation.
Sobsey, R., & Varnhagen, C. (1989). Sexual abuse and exploitation of people with disabilities: Toward prevention and treatment. In M. Csapo & L. Gougen (Eds.), Special education across Canada (pp. 199-218). Vancouver: Vancouver Center for Human Development and Research.
Speece, M. W., & Brent, S. B. (1984). Children's understanding of death: A review of three components of the death concept. Child Development, 55, 1671-1686.
Stavrakaki, C. (1997). Anxiety disorders in persons with mental retardation: Diagnostic, clinical and treatment issues. Psychiatric Annals, 27, 182–189.
Stavrakaki, C., & Antochi, R. M. (2004). Trauma may spark OCD in patients with Down syndrome. Psychiatric Annals, 34(3), 196-201.
Stroebe, M. (1992). Coping with bereavement: A review of the grief work hypothesis. Omega: Journal of Death and Dying, 26(1), 19-42.
Stroebe, M. S. (2001). Bereavement research and theory: Retrospective and prospective. The American Behavioral Scientist, 44(5), 854-865.
Stroebe, M., & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23(3), 197-224.
Sullivan, P. M., Brookhouser, P. E., Knutson, J. F., Scanlon, J. M., & Schulte, L. E. (1991). Patterns of physical and sexual abuse of communicatively handicapped children. Annals of Ontology, Rhinology, and Laryngology, 100, 188-194.
Summers, J., Zisook, S., Sciolla, A. D., Patterson. T., & Atkinson, J. H. (2004). Gender, AIDS, and bereavement: A comparison of women and men living with HIV. Death Studies, 28(3), 225-241.
Swain, J., Griffiths, C., & Heyman, B. (2002). Towards a social model approach to counseling disabled clients. British Journal of Guidance and Counselling, 31(1), 137-152.
Takahashi, A., Watanabe, K., Oshima, M., Shimada, H., & Ozawa, A. (1997). Journal of Intellectual Disability Research, 41(2), 193-196.
Tedeschi, R. G., & Kilmer, R. P. (2005). Assessing strengths, resilience, and growth to guide clinical interventions. Professional Psychology: Research and Practice, 36(3), 230-237.
Valenti-Hein, D., & Schwartz, L. (1995). The sexual abuse interview for the developmentally disabled. Los Angeles: James Stanfield and Co.
van der Kolk, B. A. (1996). The complexity of adaptation to trauma: Self-regulation, stimulus discrimination, and characterological development. In B. A. van der Kolk, A. C. McFarlane, & Weisaeth (Eds.), Traumatic stress: The effects of overwhelming experience on mind, body and society (pp. 417-440). New York: Guilford Press.
Voelker, R. (2006). Post-Katrina mental health needs prompt group to compile disaster medicine guide. Journal of the American Medical Association, 295(3), 259-260.
Walsh, F. (2003). Family resilience: A framework for clinical practice. Family Process, 42(1), 1-18.
Wilson, C., & Brewer, N. (1992). The incidence of criminal victimization of individuals with an intellectual disability. Australian Psychologist, 27(2), 114-117.
Wortman, C. B., & Silver, R. C. (1989). The myths of coping with loss. Journal of Consulting and Clinical Psychology, 57, 349-357.
Yapa, P., & Clarke, D. (1989). Schizophreniform psychosis associated with delayed grief in a man with moderate mental handicap. Mental Handicap Research, 2, 211–212.
Zakour, M. J., & Harrell, E. B. (2003). Access to disaster services: Social work interventions for vulnerable populations. Journal of Social Service Research, 30(2), 27-54.