Utah's Refugee Population and Disabilities: Challenges and Lessons Learned

A collaborative project focused on increasing awareness of disability issues within refugee populations in Utah and building disability leadership opportunities for people of refugee immigrant backgrounds. We will describe successful experiences and lessons learned about the complexity and challenges while working with refugee communities on disabilities issues. Two fellows will share their experiences and insights related to the work developed. This initiative represents an opportunity to think and work collectively.

Utah's Refugee Population and Disabilities: Challenges and Lessons Learned

meet Helene Kalala >

Project Narrative

1. Please describe your activities during your fellowship experience. Describe your final capstone project(s).
During my fellowship experience working on our diversity project, I did a lot of paperwork for the project at the beginning; and trained translators and interpreters to take their CITI certifications. For this project, we didn’t use professional translators from agencies, which would have been cheaper (cost less), but we preferred to use refugees themselves as strategies to create, increase, and promote strong connections with refugee populations. By using community-based resources, for interpretation and translation, we chose some influential and educated community members who we trained and paid after their services. Most refugees are poor and most of the time reluctant to report some sensitive issues, especially issues concerning their family members or themselves; hiring some of their community members created jobs for them and trust in us. We could now work in partnership with some of them.

In addition, I served as the contact person between refugees’ agencies, refugee’s community leaders, refugee members, and the principal investigator, to inform about our project and recruiting refugees for focus groups. I also translated some of our project documents from English to French.

With another project staff colleague, we helped organize and facilitate focus groups with refugee populations; collected data and information during the focus groups; helped develop culturally competent information and materials about disability issues, focusing on aspects particularly important to refugees; and finally together, prepared disability materials and information to be presented to refugee audiences in Salt Lake City, Utah. We organized six focus groups including 1 Latino, 1 Somalia, 2 Congolese (French and Swahili Congolese speaking), 1 South Soudan, 1 Iraqi or Arabic community; from which I learned that every refugee community has and struggles with its own particular disability issues, different from other communities.

The Diversity Efforts Investing in People Project focused on increasing awareness of disability issues within refugee populations in Utah and building disability leadership opportunities for people of refugee immigrant backgrounds. At the beginning of this project, we created an advisory board with representatives from the partner agencies who met with us quarterly to review the developed materials and provided pertinent feedback and guidance. Partner agencies helped us identify community level contacts with whom we worked to ensure that specific refugee needs were addressed. Together, (with partner agencies) we helped contact, recruit, advertise, and identified refugee leaders and resources to be included in the project process.

Working on this project, we encountered, a lot of challenges:
a) Utah State University was one of our potential partners; however, “to conduct research with human participants at Utah State University, the Institutional Review Board (IRB) requires that all researchers be certified via the CITI program. The CITI Program provides research ethics education to all members of the research community. To be certified at Utah State University, a set of modules must be completed via the CITI website with an overall score of at least 80%”. This was a big challenge with refugee populations.

b) At the beginning of this project we created an advisory board with representatives from the partner agencies and met with them quarterly to review the developed materials and provide pertinent feedback and guidance. Partner agencies helped us identify refugee’s community leaders who in turn facilitated our easy contact with individual refugees.

c) Refugee peoples are very busy and work low paid jobs, most of them work two jobs to meet the needs of their families. Scheduling appointments with them was very hard; we had to work around their hours. Sometimes, we met them late in the evening, in their homes; and Saturday was the only day we could meet for focus group and sometimes very late, in the evening. This was challenging because some staff, including the project director, lives in a different city which meant returning home very late.

d) As mentioned above, refugees in Utah represent 20 countries and speak more than 50 languages. To work on this project, we had to organize and facilitate six focus groups with them (including data collection and interpretation). All project documents had to be translated into refugee’s languages for each focus group. All translators had to be CITI certified. Finding those who are educated and who could fully understand the training material in English, and pass the quizzes with 80%, took months and weeks. Sitting by and training them, took several weeks. Collecting qualitative data from them to identify needs related to their disability issues by interviewing and observing through focus groups, took months.

e) Many refugee people are single mothers; as they lost their husbands in the war, therefore, during focus groups, we had to provide food and childcare services; and sometimes, provide transportation. Most of the time, when they come directly from work, we had to provide food. Knowing some of their groups are not comfortable with some types of food, and to be culturally competent, we had to order some special food they requested.

f) Finance is an important factor when working with refugee population to meet all these expenses.

g) To get the approval of the project by the RIB, was a very long process that took us months.

h) To organize and facilitate six focus groups with refugee populations (including data collection and interpretation) was also a very long process due to the difficulty in the scheduling of the meetings at a convenient date and time.

i) To develop culturally competent information and materials about disability issues, focused on aspects particularly important to refugees was very important to the refugee population.

In conclusion, we hosted six focus groups and continue to present to them on disability and information relevant to them. The overarching goal of our project is to increase the understanding of minority families about early developmental health issues and their local health care system.

2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
In general, our project informed refugee parents and first generation immigrants in Utah; in particular, it informs refugee families with or at risk of having children with disabilities or special health care needs. With this project, refugee parents are exposed to basic training information, in disability-related areas. We have identified and discussed disability-related issues for Utah refugee communities, and then we have developed basic materials to provide information and training about local and general early intervention, education, health, services, and resources. After presentations to diverse refugee groups, other dissemination methods will be used. Refugee parents and families will have access to evidence-based reliable information, resources, and training that will be translated and/or adapted for refugee speaking languages as much as possible, making this information accessible in a culturally competent and sensitive manner.

Our partners which are composed of some Utah organizations would also be informed, including Center for Community Engaged Learning at Weber State University, University Neighborhood Partners at the University of Utah, Refugee & Immigrant Center / Asian Association of Utah, Catholic Community Services, and School District Programs, among others.

After the presentation, we’ll also provide hard and soft copies of the materials developed such as the master file and handouts.

3. Why did you choose to work on that project(s)?
We chose to work on this project to help refugee and immigrants families living with children with disabilities in Utah, since the refugee population here represent more than 20 countries and 53 languages heavily concentrated (in Salt Lake County) (Utah Department of Workforce Services, Refugee Services Office, 2013); and current data shows a significant health and disability disparity gap among minority groups in Utah. For example, the Autism and Developmental Disabilities Monitoring Network 2012 report, by the CDC and U.S. Department of Health, showed a large difference in prevalence of the Autism Spectrum Disorder (ASD) between the White population (40 per 1,000) and other race/ethnicity groups (6.5 per 1000), a more than 600% difference. Increasing disability awareness within refugee and minority populations in Utah represents a needed but complex challenge. The need for accessible information for minority and refugee families, including special health care needs, and eliminating decreased service access due to their new arrival status (refugees), language barriers, acculturation/assimilation status, poverty, lack of insurance, and low levels of education (for some) is a challenge.

Therefore, the purpose of this project is to support and develop leadership capabilities within refugee; these leaders would have the advantage of knowing the organizations/partners/programs working with diverse groups in the area, knowing leaders and key contacts from diverse refugee populations, and working well with those from diverse population backgrounds; and also to increase disability knowledge and information awareness within refugee and immigrant communities.

4. What did you gain from being a Diversity Fellow?
My being a Diversity Fellow benefited me in many different ways: a) I gained a lot of experiences in working with refugee communities and immigrants living in Utah, for example: meeting with refugee agency representatives and refugees themselves by leading focus groups, helping them feeling up paperwork, and training them; b) I gained a lot of knowledge by increasing understanding of different disability topics (such as early signs delay, autism, traumatic brain injury, family relations, basic access to healthcare system services, and legal issues related to families having children with disabilities and special health care needs) based on information collected from qualitative activities.

In addition, it has also helped me create a network with people of diverse cultural, and educational background. For example, I had the advantage of knowing the organizations/partners/programs working with diverse groups in the area, knowing leaders and key contacts from diverse refugee populations. During the focus groups, we were active listeners and learners by being culturally competent. We interviewed refugee participants and collected a lot of information related to their understanding of disability issues. We also learned how much resources they knew to get help when they have a child with a disability issue.

So far, during focus groups, we collected some common points when refugee participants define disability; and also some few points which differentiate them. Some had defined disability based on culture, some based on religion believe; while others defined disability based on community interpretation, etc. For most of them, physical disability is the most prevailing, the most know, and the most understood.
We found that many refugees are ignorant of early signs of disability. Few of them would notice some signs of disability on their children, but would keep quiet or hid it because they believe disability is a shame; or sometimes, they are wives who want to please their husbands who prefer a normal child. Disability subject is not openly discussed in refugee communities. The stigma of disability is very strong within the refugee population.

Finally, I learned another type and population group of disability, and some new approaches to disability and treatment: child and adolescents with special health care needs, and the role of family-centered care and its approach.

5. How will this experience impact your education or career decisions?
This experience will help me expand my knowledge, and open many ways on my career path. In addition, my experience of being an immigrant in the USA, combined with the experience gained from working with the refugee communities on disability issues in Utah through the fellowship, has given me the opportunity to understand certain things that I would share with others who would be willing to help this population in many different ways in the future. From being a Diversity Fellow I got the opportunity to be enrolled in the leadership training programs, related to disabilities, URLEND (Utah Regional Leadership Education in Neurodevelopmental Disabilities). In this program, I’m acquiring a lot of important skills related to developmental disabilities and how to provide optimal services to child and adolescents with special health care needs; and the role of family-centered care, which is a new concept to me. I’m also understanding the American heavy system of care.

6. What are your future goals? Where do you see yourself 5 years from now?
As a social worker, now enrolled in URLEND (The Utah Regional LEND, Leadership Education in Neurodevelopmental and related Disabilities) training program that covers five states: Utah, Idaho, Montana, Wyoming and North Dakota. In this program, professionals are trained to move beyond discipline boundaries to provide optimal services to child and adolescents with special health care needs. My goal is to work in the disability field and become a leader in the refugee community, in order to help families of children and youth living with disabilities. In 5 years from now, I would like to become an advocate for refugees living with disabilities in Utah.

7. What recommendations do you have for other fellows?
I would recommend to other fellows to work harder even move beyond what is recommended or required in order to be successful. Collaborate regularly with other fellows, and always read other fellow comments on slack or communicate with them by electronic messages.