Benson Gunther and Dr. Blake Hansen, Counseling Psychology and Special Education

Introduction

Families that have children with disabilities, specifically emotional/psychological/social disabilities (i.e. Autism, Down Syndrome, and other cognitive/neurodevelopmental disorders), encounter seemingly insurmountable distresses on a day-to-day basis in times of peace, let alone in times of emergency. These families depend heavily upon a consistent, well-established home environment with a precisely-calculated daily routine and access to key resources that keep their family unit intact. When rising political turmoil or threats of domestic violence culminate to jeopardize the safety of the population at-large, these families are compelled to abandon their homes and all the security that their homes provide. And while packing-up and fleeing home at a moment’s notice is certainly no easy task for an ordinary family, it is especially difficult for families that have children with disabilities. Such a task would be unthinkable except for prior preparedness on the part of the family and coordinated assistance from the community.

The purpose of this project is to examine what preparatory measures are necessary for families with disabled children in times of a refugee crisis, on both the part of the individual/family, and the community. This study will be conducted in Kosovo, which experienced its own refugee crisis in the late 1990’s, at the peak of conflict with Serbia. The war caused approximately 1.5 million people to flee, which was over 90% of the population. Now, more than 16 years later, many of these refugees have returned to Kosovo and have re-established their homes.

Methodology

Participants living in Pristina (Kosovo’s capital city) and surrounding regions were recruited with the help of an organization called Down Syndrome Kosova (DSK). The study sample consisted of 7 parents who have living children with Down syndrome and were displaced during the 1999 Kosovo refugee crisis. A focus group was convened and the parents were asked a series of questions about their experience during the refugee crisis, with an emphasis on understanding what preparations are necessary during a refugee crisis on both the part of the family and the community. The discussion was video recorded, and parents’ responses were analyzed both qualitatively and quantitatively based on content.

Results

7 children with Down syndrome ranged in age from 1 to 13 years old, with a mean age of 6 years old, and a distribution of 4 males to 3 females. Parents emphasized that their major concern during the Kosovo refugee crisis was safety, and secondary to that was limitations in their mobility. Though all of the families successfully fled the country, many had very close encounters with enemy forces and all faced difficulties in cooperation and communication within their families and with others. Parents revealed that compliance to one step directions was essential for movement and relocation during the crisis. Furthermore, many children with Down syndrome lacked the social skills necessary to request help and interact with friendly forces such as local police and international ground troops. An underlying factor that parents emphasized was the importance of effective two-way communication between parents and child and vice versa. Many parents revealed that their child was confused about what was going on, and the parents were unable to convey the nature of the situation to them. Likewise, parents faced challenges in cooperativity with their child. Many parents also indicated that their child was exceptionally fearful and unable to manage their emotions during the crisis, which led to difficulty moving and interacting with other individuals. The majority of parents interviewed stated that involvement and help from the community was little to none. And all of the parents interviewed stated that they were significantly under-prepared to flee the country and relocate abroad.

Discussion

The results of this project indicate a need for greater preparatory measures on both the part of the family and community prior to a refugee crisis. Communities which are likely to face such a crisis should have material necessities readily available, and families with children with Down syndrome should indicate the need for additional resources and assistance to local authorities. Local authorities and international aid organizations can be of most help by coordinating assistance from able-bodied individuals in the community to help such families. Of equal importance is preparation on behalf of the family prior to fleeing their homes. Children should be capable of effectively communicating with their parents and other individuals, and be able to indicate the need for help. Necessary non-material resources, such as close contact with loved ones and a safe and comfortable environment, can help children manage their emotions and cooperate effectively while fleeing the country. Coordination with neighbors and other families is of the utmost significance, and many of the parents interviewed indicated that individuals were focused solely on themselves and their personal needs during the 1999 Kosovo refugee crisis.

Conclusion

Current estimates suggest that as many as 65 million people are forcibly displaced worldwide, with an additional 34,000 people abandoning their homes daily. And while considerable media coverage and political discussion is given to the large majorities fleeing from their homes, the few families who have children with Down syndrome face additional obstacles which make it even more difficult to relocate elsewhere. Additional attention and resources need to be given to such families, and the communities wherein these families reside, as well as international help organizations, can perhaps best help by providing the necessary means and coordinating help from others within their communities. With an added emphasis to aiding these families, the hope is that families with children who have Down syndrome and other disabilities will be more safe, more capable of leaving their homes, and more prepared to establish residence abroad.