Frontline Initiative Coping with Disaster

The events of September 11 had a big impact on Americans; certainly adults with cognitive disabilities were no different. While we hope nothing like this will ever happen again, we are reminded that disasters come in many forms and can strike at any time. The sudden and unanticipated nature of the attacks made us realize how important it is to prepare for disaster. Reflecting on how individuals with disabilities reacted to September 11 can help prepare us to respond to future traumatic events.

Project Cope was started one week after September 11 in recognition that some individuals with disabilities faced unique coping challenges in the aftermath of disaster. A major goal of the project is to develop support systems for individuals with developmental disabilities and their families. In the first month, we asked how adults with intellectual disabilities and their support providers were affected. We found that the reactions depended on three things: first, their understanding of the disaster; second, the reactions of important people in their lives; and third, their previous experience with trauma. We found that Direct Support Professionals (DSPs) played pivotal roles in recognizing traumatic stress reactions and in supporting coping recovery.

This article summarizes our current understanding of how people with intellectual and developmental disabilities reacted to the September 11 attacks and subsequent events. We then provide a number of steps that can be taken now to prepare for a future disaster. We also describe some ways of supporting people with disabilities should a disaster occur.

How did people react to the September 11 attacks?

After the September 11 attacks, many adults with cognitive disabilities reacted with sadness, anxiety, and anger, clearly understanding what happened. Some who showed no specific awareness of the events were upset by the reactions of others in their households. Others showed no reaction at all. Some specific examples included —

• A common reaction was concern for family members and a desire to call them. Some were upset if they could not make immediate contact. Others were afraid to take public transportation or were worried that their homes were not safe.
• Some did not understand the scope of the event, but were frightened by the images on television, just as they would be of a scary movie. Others thought the attack was recurring each time it was shown on television.
• Upset about disruption of routine. Some were distressed when preferred activities were cancelled or favorite television programs were not shown.
• Increase in problem behaviors. Outbursts and other challenging behaviors sometimes occurred, especially when others discussed the attack. Examples included two men who began to hit themselves, a woman who kept repeating, “I didn’t do it,” and another man, prone to angry outbursts, who threw a chair.
• Some reported having difficulty focusing on chores at home and tasks at work.
• Disturbed sleep. Several people reported difficulty in falling asleep, staying asleep, waking up too early, or having disturbing dreams.

What can you do now?

We can not predict if or when a disaster might happen. We do know that the time to prepare for a disaster is before they happen by developing an evacuation plan. We offer the following suggestions for DSPs when preparing individuals with intellectual and cognitive disabilities for potential disasters —

• Develop disaster and resident support plans. Have a checklist of essentials for each member of the household or work environment, with medicines, favorite possessions, names and phone numbers of family members, and whatever else might be taken on an over-night trip. Reassure those who use wheelchairs, have difficulty walking, or are visually impaired that someone will assist them. For each shift, assign staff members to assist each individual. Ensure that people know or have access to the home and work locations of loved ones; on September 11th, some were perplexed and fearful because they were unsure of where family members worked in lower Manhattan. People who live in supported apartments may not have a DSP on site when they need to evacuate. It is important that they have their own checklist and know exactly what to do in case of emergency.
• Rehearse the evacuation plan. Understand that practice may initially increase anxiety because it is a change in routine or a reminder of unpleasant events. Practice the plan so it becomes familiar. With practice, the plan becomes automatic and anxiety usually diminishes. During rehearsal, practice remaining calm when stressed and using coping skills.
• Actively develop coping skills. Set up opportunities to teach and practice coping skills. Like everyone else, adults with intellectual and cognitive disabilities benefit from learning progressive relaxation techniques and helpful self-talk (positive coping statements). If you are not experienced in teaching stress management, locate professionals and other resources in your agency or community who can help. During rehearsal, ask questions like “What should you do when you are upset?” “Who can help you with that problem?” Look for answers like “Use my relaxation” and “Call this number.”

What should you do if something bad does occur?

A stressor such as car accident, fire, death of a family member, or the illness of a co- worker will cause anxiety. In addition, news reports about war, terrorism, or airplane accidents may evoke strong feelings for people who reacted to the events of September 11th. If potentially upsetting events do occur, consider the following —

• Be aware of individual reactions. Know how people typically respond to stress and watch for its signs. Discuss upsetting events individually rather than in groups. Group discussions can be upsetting for some individuals as levels of understanding may vary. Tune into their body language. Provide opportunities for individuals to express their feelings in ways that feel comfortable for them, but don’t force people to talk if they do not wish to.
• Acknowledge fears. Check on what people are feeling. Use pictures for those who have trouble with verbal expression. Correct misunderstandings that may be contributing to fears. Determine whether talking about a “fear” might have developed into a way to get attention or avoid an activity. If so, schedule specific times to discuss these fears.
• Check understanding. Ask and answer questions using language the person understands. Listen carefully to conversations and check for misconceptions. Repeat correct information often. For public disasters, listen to statements from authorities and follow their advice.
• Maintain routines. Continue scheduled activities and familiar routines. Try not to cancel activities unnecessarily.
• Family contact. During stressful times, encourage individuals to contact family members or friends on a regular basis. Direct support staff should have a list of family contacts available. Should there be an evacuation, immediately contact the family.
• Limit exposure to upsetting material. Repeated viewing of a public disaster can increase fear. If world events result in continuous news coverage, watch a videotape, or turn off the television and play a board game. Avoid watching the news for a long time or before bed. This is especially important for people with sleep problems. Structure any exposure to traumatic events that does occur. Talk about what was seen.
• Monitor the household environment. Support staff, family members, co-workers, and housemates have their own stress reactions. Watch for the effects this may have on individuals with cognitive disabilities. Take care of yourself.

Other Suggestions for Direct Support Professionals

Direct support professionals play a significant role in the way people with disabilities handle traumatic events. They are often in a unique position to recognize people’s reactions first-hand and can support the immediate use of the coping strategies. It helps for caregivers and family members to be aware of their own reactions and understand how these affect others. Strong reactions can cause distress for everyone in a household. Calm and caring responses to a traumatic event produce the opposite result.

This guide is a product of Project Cope of the Westchester Institute for Human Development (WIHD), a University Center for Excellence in Developmental Disabilities Education, Research, and Service at the Westchester Medical Center in Valhalla, NY. The guide was written by Marilyn Vitale, M.A., Daniel Crimmins, Ph.D., and Anne Farrell, Ph.D. Visit http://www.projectcope.net for more information.