Interactive Resource Map Assists Kenyans with Disabilities

When IU School of Medicine student Mary Ann Etling envisioned her summer of 2020 as a Slemenda Scholar with the AMPATH partnership in Kenya, she didn’t think it would involve sitting behind a computer and learning how to populate a searchable database.

IU School of Medicine student Mary Ann Etling

Unfortunately, the coronavirus pandemic prevented Etling and her fellow Slemenda Scholars from travelling to Kenya, but this limitation didn’t stop Etling from creating a global collaboration to aid Kenyans with disabilities.

Etling worked with pediatricians Dr. Eren Oyungu from Moi University School of Medicine in Kenya and Dr. Megan McHenry from IU School of Medicine as well as Moi medical student, Michael Musili, to develop an interactive map of organizations and resources for children with disabilities in Kenya.

Dr. Eren Oyungu, Moi University School of Medicine

“Our hope is that when caregivers of children with disabilities visit Moi Teaching and Referral Hospital, pediatricians, physical therapists, or occupational therapists can use the map to connect caregivers to more resources,” said Etling.  “Additionally, we hope that this is a resource that persons with disabilities and caregivers themselves will use on their smart phones.”

The disability resource map on the AMPATH website includes more than 150 organizations within Kenya. Each organization was contacted to confirm the information on the map. The map can be searched by the service needed, such as “speech and language therapy,” and filtered for location and other variables. The website also includes information about applying for a disability card and a process for organizations to apply to be added to the site.

Dr. Megan McHenry, IU School of Medicine.

Disability resources in Kenya are displayed on a searchable map

Dr. Oyungu said some of the most prevalent disabilities in Kenya include epilepsy which often leads to learning disabilities and developmental delays; cerebral palsy which can result in the inability to walk due to the lack of early intervention; congenital malformations such as spina bifida and limb malformation; and autism. Dr. Oyungu added that for children with cerebral palsy “swallowing also becomes a problem, so many of them will die of aspiration pneumonia unless something is done. We also have some hearing disabilities and vision issues, however, due to lack of diagnosis, it’s not well documented,” he added.

Dr. Oyungu added that many county level occupational therapy facilities may not have appropriate equipment or individuals trained to work with children. “There is also a lack of diagnostic equipment to diagnose speech, motor, or an autism diagnosis,” he said. “There is a big opportunity for institutions like MTRH to improve the skills of their employees and offer local training so that other people from other counties will be trained on rehabilitation and diagnosis in children,” he added.

“Most of the resources and help for children with disabilities are concentrated within sub-county, county, and referral hospitals, as well as in a few special education schools throughout Kenya. While some therapies and support are available, they may not be well-known to those within the community and in rural areas,” Dr. McHenry said.

“When you give birth to a child with a disability, it can be overwhelming to locate all of the resources in your area that offer services of support. We want to make these resources as accessible as possible to families,” said Etling.

The process of creating the resource guide has also helped to identify some strategies for improving access. “Something that we are finding is that there are few resources that really go into the community and serve families near their homes,” said Dr. McHenry. “It is often difficult to travel far with a child with disabilities, so we need resources that can do outreach into the homes and communities.”

Moi University School of Medicine Student Michael Musili

Etling said the resource map might also help organizations in Kenya better serve their mission. “This tool would be able to show them what regions of Kenya are without access to specific services. With that information, local Kenyan organizations can be more attentive to those living with a disability in more remote areas,” she said.

Even while sitting in Indiana, Etling embraced the partnership aspect of AMPATH. “I learned that in the AMPATH partnership, it is required that there is a Kenyan leader on every project. As an American medical student that has never been to Kenya, I felt that it was a disservice not to have a Kenyan medical student involved,” she said.

“I connected with Michael (Musili), a student in his final year of medical student, and he joined the project.” Musili visited organizations across Kenya, confirming contact information and taking photos to ensure that the map is as current as possible. Two years ago, Musili was one of several Kenyan medical students who had the opportunity to visit IU School of Medicine and he reflected on the experience during the annual Tusker Tales event.

"Being a part of this project is something that I really admire and working with Etling is a fantastic thing. She won't leave any stone unturned to just make sure the whole project was a success. I really admired her determination and commitment,” said Musili.

“While visiting the different organizations in Kenya I was also surprised to find out that there were many organizations offering services to people with disabilities that I never knew they existed,” he continued. “I think that is also the case with many parents and healthcare providers for people with disabilities. They may not know where to refer the patients/children with disability. But thanks to this project, I strongly believe this platform will be a one-stop website where people with disabilities will access the help they need from whichever part of the country."

This experience is not Etling’s first effort to connect families with resources for their children with disabilities. Prior to medical school, Etling received a Fulbright U.S. Student research grant for one year to learn about the barriers that caregivers of children with disabilities experienced in northern Uganda. One of her findings was that many caregivers were unaware of the organizations that existed nearby. She held a one-day workshop to connect families to the organizations in northern Uganda.

For Etling, this project felt like a natural extension of her research in Uganda. “I believe that having this interactive resource map will serve as a sustainable connecting point between organizations, providers, caregivers, and persons with disabilities,” she concluded.