Emergency preparedness of families of children with developmental disabilities: What public health and safety emergency planners need to know


  • Susan Wolf-Fordham, JD
  • Carol Curtin, MSW
  • Melissa Maslin, MEd
  • Linda Bandini, PhD
  • Charles D. Hamad, PhD




children, developmental disabilities, emergencies, disasters, functional and access needs, emergency planning, emergency preparedness


Objective: To assess the emergency preparedness knowledge, behaviors, and training needs of families of children with developmental disabilities (DD).

Design: An online survey.

Participants: A sample of 314 self-selecting US parents/guardians of children with DD, aged birth-21 years.

Main outcome measures: 1) Preparedness self-assessment; 2) self-report regarding the extent to which families followed 11 specific preparedness action steps derived from publicly available preparedness guides; and 3) parent training and support needs.

Results: Although most participants assessed themselves to be somewhat to moderately well prepared, even those who reported being “very well prepared” had taken fewer than half of 11 recommended action steps. Most participants expressed a need for preparedness support; virtually all the respondents felt that training was either important or very important.

Conclusions: Children with disabilities are known to be particularly vulnerable to negative disaster impacts. Overall, parents in this study appeared under-prepared to meet family disaster needs, although they recognized its importance. The results suggest opportunities and methods for public health and safety planning, education and outreach to parents of children with DD who would benefit from targeted training such as information and skill building to develop effective family preparedness plans and connections to local emergency management and responders.

Author Biographies

Susan Wolf-Fordham, JD

Project Director, E.K. Shriver Center, University of Massachusetts Medical School, Charlestown, Massachusetts.

Carol Curtin, MSW

Research Assistant Professor, Department of Family Medicine and Community Health, E.K. Shriver Center, University of Massachusetts Medical School, Charlestown, Massachusetts

Melissa Maslin, MEd

Research Associate, E.K. Shriver Center, University of Massachusetts Medical School, Charlestown, Massachusetts.

Linda Bandini, PhD

Associate Professor of Pediatrics, E.K. Shriver Center, University of Massachusetts Medical School, Charlestown, Massachusetts

Charles D. Hamad, PhD

Associate Professor of Pediatrics, E.K. Shriver Center, University of Massachusetts Medical School, Charlestown, Massachusetts


National Commission on Children and Disasters: 2010 Report to the President and Congress. October 2010. AHRQ Publication No. 10-M037. Available at http://archive.ahrq.gov/prep/nccdreport/nccdreport.pdf. Accessed October 1, 2012.

Child and Adolescent Health Measurement Initiative: Who are Children with Special Health Care Needs (CSCHN). Baltimore, MD: Data Resource Center. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCB), 2012. Available at http://childhealthdata.org/docs/nsch-docs/whoarecshcn_revised_07b-pdf.pdf. Accessed October 1, 2012.

Baker L, Baker M: Disaster preparedness among families of children with special health care needs. Disaster Med Public Health Prep. 2010; 4(3): 240-245.

Allen GM, Parillo SJ, Will J, et al.: Principles of disaster planning for the pediatric population. Prehosp Disaster Med. 2007; 22(6): 537-540.

Centers for Public Health Preparedness Network: 2006-2007 ASPH/CDC Vulnerable Populations Collaboration Group Preparedness Resource Kit. October 2007. Available at http://preparedness.asph.org/perlc/documents/VulnerablePopulations.pdf. Accessed October 1, 2013.

Garrett A, Grant R, Madrid P, et al.: Children and megadisasters: Lessons learned in the new millennium. Adv Pediatr. 2007; 54(1): 189-214.

Markenson D, Fuller E, Redlener I: Emergency Preparedness: Addressing the Needs of Persons with Disabilities. New York, NY: National Center for Disaster Preparedness, March 2007. Available at http://www.ncdp.mailman.columbia.edu/files/DISABILITIES.pdf. Accessed October 1, 2013.

Peek L, Stough L: Children with disabilities in the context of disaster: A social vulnerability perspective. Child Dev. 2010; 81(4): 1260-1270.

Rath B, Donato J, Duggan A, et al.: Adverse health outcomes after Hurricane Katrina among children and adolescents with chronic conditions. J Health Care Poor Underserved. 2007; 18: 405-417.

Drayna PC, Hansen A, Boggs R, et al.: Disaster management and emergency preparedness for children and youth with special health care needs. Clin Pediatr Emerg Med. 2012; 13(2): 125-132.

Gershon R, Kraus L, Raveis V, et al.: Emergency preparedness in a sample of persons with disabilities. Am J Disaster Med. 2013; 8(1):


Mace S, Sharieff G, Bern A, et al.: Pediatric issues in disaster management, part 3: Special healthcare needs patients and mental health issues. Am J Disaster Med. 2010; 5(5): 261-274.

Fox M, White G, Rooney C, et al.: Disaster preparedness and response for persons with mobility impairments: Results from the University of Kansas Nobody Left Behind Study. J Disabil Policy Stud. 2007; 17(4): 196-205.

Smith D, Notaro S: Personal emergency preparedness for people with disabilities from the 2006-2007 Behavior Risk Factor Surveillance System. Disabil Health J. 2009; 2(2): 86-94.

U.S. Department of Justice Civil Rights Division: Information and Technical Assistance on the Americans with Disabilities Act Project Civic Access. Available at http://www.ada.gov/civicac.htm. Accessed May 15, 2014.

United States Department of Homeland Security/FEMA: Guidance on Planning for Integration of Functional Needs Support Services in General Population Shelters. Washington, DC: U.S. Department of Homeland Security, November 2010. Available at http://www.fema.gov/pdf/about/odic/fnss_guidance.pdf. Accessed December 1, 2013.

United States Department of Homeland Security/FEMA: The Ready Campaign. U.S. Department of Homeland Security. April 30, 2013. Available at http://www.ready.gov. Accessed December 1, 2013.

Bastian J: Family preparedness: An important step in emergency management. Popul Health Matter. 2009; 22(3): 6.

Davis E, Phillips B: National Council on Disability. Effective Emergency Management: Making Improvements for Communities and People with Disabilities. Washington, DC: National Council on Disability, August 12, 2009. Available at http://www.ncd.gov/policy/emergency_management. Accessed August 1, 2013.

Priestly M, Hemingway L: Disability and disaster recovery: A tale of two cities? J Soc Work Disabil Rehabil. 2007; 5(3-4): 23-42.

United States Federal Emergency Management Agency: Are you ready? 2004. Available at http://www.fema.gov/areyouready. Accessed August 1, 2013.

Redlener I, Grant R, Abramson D, et al.: The 2008 American preparedness project: Why parents may not heed evacuation orders & what emergency planners, families and school need to know. Annual survey of the American public by the National Center for Disaster Preparedness, Columbia University Mailman School of Public Health and the Children’s Health Fund. National Center for Disaster Preparedness Web site. 2008. Available at http://ncdp.columbia.edu/library/publications/?search=The+2008+American+Preparedness+Project%3A+Why+Parents+May+Not+Heed+Evacuation+Orders+and+What+Emergency+Planners%2C+Families-+and+Schools+Need+to+Know. Accessed August 1, 2013.

Kohn S, Eaton J, Feroz S, et al.: Personal disaster preparedness: An integrative review of the literature. Disaster Med Public Health Prep. 2012; 6(3): 217-231.

National Center for Disaster Preparedness, Columbia University, Mailman School of Public Health: The American Preparedness Project: Executive summary: Where the US public stands in 2011 on terrorism, security, and disaster preparedness. New York, NY: Columbia University Academic Commons, 2011. Available at http://academiccommons.columbia.edu/catalog/ac%3A148122. Accessed December 2, 2013.

Olympia RP, Rivera R, Heverley S, et al.: Natural disasters and mass-casualty events affecting children and families: A description of emergency preparedness and the role of the primary care physician. Clin Pediatr. 2010; 49(7): 686-698.

Shaw R, Kobayashi K, Kobayashi M: Linking experience, education, perception and earthquake preparedness. Disaster Prev Manage. 2004; 13(1): 39-49.

United States Department of Homeland Security/FEMA: Personal preparedness in America: Findings from the 2009 Citizen Corps National Survey. August 2009. Available at http://www.ready.gov/personal-preparedness-survey-2009. Accessed August 12, 2013.

Murray JS: Ask the expert disaster preparedness for children with special healthcare needs and disabilities. J Spec Pediatr Nurs. 2011; 16(3): 226-232.

Baker LR, Cormier LA: Disaster preparedness and families of children with special needs: A geographic comparison. J Community Health. 2013; 38(1): 106-112.

Lou J, Braun M, De Leon J, et al.: Emergency preparedness for children with autism: A needs assessment for a vulnerable population [PowerPoint slides]. Washington, DC: American Public Health Association, November 2007. Available at https://apha.confex.com/recording/apha/135am/ppt/free/4db77adf5df9fff0d3caf5cafe28f496/paper156468_1.ppt. Accessed August 12, 2013.

Mulligan-Smith D: Family Readiness Kit Preparing to Handle Disasters. 2nd ed. Elk Grove Village, IL: American Academy of Pediatrics. Available at http://www2.aap.org/family/frk/aapfrkfull.pdf. Accessed December 6, 2013.

Cambridge Massachusetts Public Health Alliance Advanced Practice Center for Emergency Preparedness: Emergency Preparedness Begins At Home [CD Rom]. Cambridge, MA: Cambridge Public Health Department.

Community Education and Child Advocacy Team, Riley Hospital: Project SAFEescape. SAFEescape. Available at http://safeescape.pediatrics.iu.edu/index.aspx. Accessed August 12, 2013.

Kailes JI: Disaster resources for people with disabilities, disability-related organizations and emergency managers. June Isaacson Kailes. July 10, 2014. Available at http://www.jik.com/disaster.html. Accessed December 2, 2014.

Massachusetts Disability Policy Consortium: Personal emergency preparedness plan. Massachusetts Disability Policy Consortium. Available at http://www.dpcma.org/Publications/tabid/423/Default.aspx. Accessed August 12, 2013.

Massachusetts Department of Public Health: Directions: Resources for Your Child’s Care. 2nd ed. Boston, MA: Massachusetts Department of Public Health. Available at http://www.mass.gov/eohhs/gov/departments/dph/programs/family-health/directions/. Accessed September 15, 2013.

Baker MD, Baker LR, Flagg LA: Preparing families of children with special health care needs for disasters: An education intervention. Soc Work Health Care. 2012; 51(5): 417-429.

Singer GHS, Marquis J, Powers LK, et al.: A multi-site evaluation of parent to parent programs for parents of children with disabilities. J Early Interv. 1999; 22(3): 217-229.



How to Cite

Wolf-Fordham, JD, S., C. Curtin, MSW, M. Maslin, MEd, L. Bandini, PhD, and C. D. Hamad, PhD. “Emergency Preparedness of Families of Children With Developmental Disabilities: What Public Health and Safety Emergency Planners Need to Know”. American Journal of Disaster Medicine, vol. 10, no. 1, Jan. 2015, pp. 23-34, doi:10.5055/ajdm.2015.0185.