A Culturally Sensitive Intervention to Reduce Stigma and Improve Service Access for Somali Children and Adolescents with I/DD and their Families
1.Please describe your activities during your Fellowship experience. Describe your final capstone project(s).
During my Diversity Fellowship I worked closely with the Somali Development Center and participated in the LEND program at Boston Children’s Hospital/Institute for Community Inclusion to determine what can be done to help my community to be more inclusive than it is today.
My project informed the Somali community about Intellectual and Developmental Disabilities (I/DD) using workshops, presentations and more informal “Tea and Talk” parent groups. Initially, I gave a pretest to my community to assess their knowledge regarding disability in general. I followed with a post-test to see if they increased their knowledge and understanding of disabilities.
Education: To increase awareness, I distributed educational materials (books and pamphlets) and presented informational videos at our monthly workshops. These translated materials are very important to my community because of the lack of understanding in English language. In addition, the videos are the most important because many people in my community cannot read or write, not only in English, but also in their native language, so videos and visual posters worked to increase their knowledge of the subject matter (disabilities) much better.
We discussed difficult conversations regrading stigma surrounding mental illness and how it affects families with special needs. The need for parent support became great, which led to the creation of parent support groups where they could come together and speak about their concerns in understanding their child’s diagnosis and the services available to them.
My project had a profound impact on my community and me. I have a son who is on the autism spectrum, and I remember my struggle to understand my son’s diagnosis and finding services for him. It was a challenging experience, and I wish I had support in my community. I did not know who to talk to and ask for advice, so I suffered in silence. This project is dear to my heart, and I want to change the loneliness and isolation that we are accustomed to in our community. My project established parent support groups to help minimize isolation.
Community: My project has also had big impact in the community. For example, last March I took some families to a conference at the Federation for Children with Special Needs in Boston. This conference gave the parents a new outlook on disability. They were able to meet with other families that have children with disabilities, including people with the disabilities, who were doing an amazing job for advocating for themselves. They saw people with disabilities advocate for themselves and have jobs and being productive members of society. Through this experience, they saw the positive side and possible future for their children and how the right services can make that a reality. It gave them hope for the future of their children and a new perspective on disability.
Working with my mentors, the advisory committee, and with my community leaders helped me learn the skills and techniques needed to become a better leader myself. I am still working to improving my leadership skills. I have been accepted to the AUCD Leadership Academy, so I can learn how to better help those in my community who are counting on me.
I know that people in my community are not used to seeing women in leadership roles and I want to change that perception. It takes endurance and patience to work with a community that has stigma and little to no knowledge about disability. It was a challenge for me to combat these perceptions and to effectively raise awareness. This Fellowship also helped me to learn and reflect on my own knowledge and learning style, as it was beneficial for me to look internally first before deciding how to best educate and inform others.
5. How will this experience impact your education or career decisions?
This experience gave me a better understanding of how to best impact my own community. I have been able to network extensively with other like-minded individuals through the opportunities I have been given to participate in events that will work to further my career trajectory. I collaborated with other Somali Diversity Fellows from other institutions in other states and we shared strategies and techniques on how to better help families with special needs in our community. I met with AUCD trainees at monthly meetings, where I learned more about the vast AUCD network. The AUCD trainees and I were able to share our projects with each other and we were able to give each other advice on how to tackle the issues that were raised. I was able to see different approaches to problems from the trainees as well that I could take back to my community.
I visited the University of Minnesota and was able to meet with other LEND fellows and I learned about the work they do in Minneapolis. This was an important moment for me because Minneapolis is the place where there is a substantial Somali community. The University did research within the Somali community and they produced educational materials about I/DD and autism and related disabilities, which I made use of in my presentations and work with Somali community members in Boston.
In future, I want to improve the experience of members of my community by being a leader that can advocate for them. To do that, I want to make use of all educational and research opportunities available to me, so I can be in the best position to be able to help those in need. My time as a Diversity Fellow has been an important step in that direction.
6. What are your goals? Where do you see yourself 5 years from now?
My goal is to continue working in the Somali Development Center and with families who have children with disabilities. I want to strengthen the parent support groups I have created and increase the knowledge of my community about I/DD and to continue raising awareness of disability in general. I am hoping that in the future my community will be more inclusive than it is today. Through working with my community, I have realized their needs and the extent of stigma of mental illness and I/DD. Parents should understand the importance of services their children receive and how they can be active participants in the process. This is for the purpose of helping parents know how to properly provide input and evaluate their child’s services to ensure they are getting the best and most appropriate service possible.
I want to increase the rate of children getting diagnosed early and children receiving early intervention in a timely matter. I want to help parents learn how to become better advocates for their children. Furthermore, I hope to change the community’s perception of disability and shift the focus from the parents focusing on the child’s disability to a focus on their ability. When the parents focus on ability, then they can help their children make better use of services and develop the skills they need to be a productive member of society.
In 5 years, I hope to have my Master’s in Social Work degree. With that degree, I want to be a cultural broker between the members of my community and the professionals that care for them. I want to create a bridge of communication between parent and health care and social care professionals. Parent support groups will help start the process that will result in there being leaders and allies in my community, who go on to continue to advocate and spread awareness for I/DD, which will one day help to form a more inclusive community.
7. What recommendations do you have for other Fellows?
In my experience, I know that it can be intimidating to be a LEND Diversity Fellow. To be surrounded by doctors and professionals, for some people, it can be daunting. However, the program is for everyone, and no matter what your education level is, you will learn from your peers and mentors, and you will gain the support you will need to succeed.
The greatest benefit of being a Fellow stems from the diverse background of other Fellows, as many are from otherwise marginalized communities or are parents of children with disabilities or they are self-advocates. As a result of this, learning is extended beyond the academic setting of the classroom and occurs in interactions between yourself and others, who have a different experience than your own. This experience is founded on interdisciplinary and experiential learning, which is highly unique and not something I have taken for granted during my time as a LEND Diversity Fellow.