16% of the world’s population lives with a disability–about 1.3 billion people–yet people with disabilities are often denied the right to health and experience reduced access to health care services. People with disabilities are four times as likely to be treated badly in the health system, and providers and facilities are twice as likely not to meet the needs of people with disabilities–resulting in poorer health outcomes. In Kenya, more than 80% of people with disabilities live in rural areas, and child mortality rates are four times higher among children with intellectual disabilities, for example–compounding challenges in access, connection, and trust in health systems. A Lwala patient with a disability surveyed by the Missing Billion Initiative echoes this: “The experience is not that good for most people with disabilities when seeking health care services.”
Community health workers (CHWs), as frontline workers in their communities, are charged with ensuring every household has access to health care. However, they don’t always have the training they need to support people with disabilities with the general health services they are tasked to provide to their population. A survey conducted by the Missing Billion Initiative found that 75% of surveyed CHWs in East Africa have never received any training about disabilities–despite 99% of CHWs saying they want training. Mary Adhiambo, a CHW in Migori County, has felt the impact of this in her day-to-day work. “I would visit people with disabilities but didn’t feel confident in providing them with the best care,” she says. “I wasn’t sure how to accommodate their needs.”
Improving health access for people with disabilities requires empowering and equipping CHWs with the knowledge and skills they need to provide high-quality, general health care. Although there are efforts ongoing to develop trainings for health workers on disability, no standardized, evidenced-based set of interventions exist yet to enable CHWs specifically to provide quality health services. Phyllis Heydt, co-founder of the Missing Billion Initiative, highlights the role of CHWs as key agents for changing the health care experience for people with disabilities. “Given the poorer health outcomes of people with disabilities,” she says, “it’s important we pilot and evaluate approaches that improve the abilities of health care workers to provide the very same care to people with disabilities as to anyone else. And it's critical that these efforts are done together with organizations of people with disabilities and local partners.”
To chart a path forward for disability inclusion in our community health workforce, Lwala partnered with the Missing Billion Initiative to answer the question: how can we best equip CHWs to identify, treat, and refer patients with disabilities? Together, we piloted a training model and curriculum on disability inclusion, which we cascaded to CHWs in Migori County. We are working to train and empower CHWs on disability awareness and inclusion–bringing to life a health system that centers disability justice across Kenya.
Grounding our work in participatory research
Key to this pilot has been the clarion call of the global disability rights movement to prioritize the leadership and participation of people with disabilities. This anchored our initial consortium-building phase with government and other stakeholders, as we formed a technical advisory board inclusive of people with disabilities to ground our work in technical knowledge and lived experience. Through knowledge sharing sessions with the advisory board and Migori County officials, we supported the Ministry of Health to prioritize the needs and perspectives of patients with disabilities in their agenda.
Following government buy-in, we worked with the Missing Billion Initiative and Scope Impact–a human-centered design firm–to unearth the pain points, expectations, and needs of patients with disabilities and CHWs. We used participatory research to capture collective perspectives, including interviews and focus groups with people with disabilities, CHWs (including those with disabilities), and government officials.
Several key themes emerged, including a lack of disability awareness among CHWs that created discomfort and negatively impacted trust during routine household visits. These early learnings informed the pilot, clearly demonstrating the desire and need in the health system to receive training and gain the knowledge, skills, and tools to better serve people with disabilities.
Training our first cadre of CHWs on disability inclusion
An initial train-the-trainer course paired 10 people with disabilities and 10 health workers to serve as co-trainers, centering lived experience in training delivery. Participants shared how this co-trainer model improved the training experience, deepening understanding and empathy for health providers and empowering trainers with disabilities as voices of authority. Vallent Adhiambo–a disability advocate, founder of a local empowerment organization for people with epilepsy, and one of the trainers–shared, “When I was asked to be a trainer, I was anxious at first. But then I gathered courage and realized the doctors and nurses–they didn’t know my lived experience! I had important, valuable knowledge to share, and people take the issue of disability more seriously when I am a trainer.”
The diversity of trainers complemented the curriculum, which directly referenced challenges specific to Migori that emerged during the co-design and discovery phases. This included equipping CHWs with skills for empathetic communication, training them to recognize and confront their own biases and misconceptions, and building trust with people with disabilities, ensuring they are respected and their decisions valued. The curriculum also exposed CHWs to the heterogeneity of disability–that there are many types of visible and invisible impairments.
Following the training of trainers, we cascaded the training to 395 CHWs in Rongo, one of Migori’s 8 subcounties. Immediate results from these trainings show a 16% increase in CHWs’ confidence in providing care for people with disabilities and a 4% increase in their knowledge. Already, 3,633 people with disabilities are being reached by trained CHWs throughout Rongo Subcounty.
Trained CHWs report being more alert to the needs and concerns of people with disabilities, as well as more aware of referral processes. Since the training, Mary has put into action what she learned. “After the training, I was able to help children with disabilities and their parents and caregivers,” she says. “ I also accompany my patients with disabilities to health facilities if they like, so that I can help them or their caregivers advocate when seeking services and medication.” Verolyne Opiyo, who supervises CHWs like Mary, agrees: “After the training, CHWs understand that people with disabilities are not isolated and should not be discriminated against in health settings. I see the improvement in CHW confidence.”
Moving from inclusion to disability justice in health systems
The initial findings show this training is effective for CHWs and can be built on for further refinements and replication. As we implement the pilot and evaluate its ongoing impact, we are also exploring ways to strengthen disability inclusion in health systems. Vallent and Millicent Miruka, a CHW in Migori, recently participated in a webinar hosted by the Missing Billion Initiative and London School of Hygiene and Tropical Medicine, to share the impact of the CHW training with stakeholders and disability advocates around the globe. Lwala is also supporting CHWs to map people with disabilities in their catchments, connecting them with facilities to improve referral processes.
This pilot ushers in a broader paradigm shift to move away from disability inclusion toward disability justice–in other words, promoting systems change for equitable access to all parts of the health system for everyone. Health worker training is only one part of inclusivity–it also requires accessible infrastructure, health insurance, transportation to distant clinics, and the right equipment. Based on the final evaluation, we will determine next steps for the project–including addressing the major gaps in how the health system serves people with disabilities. Some CHWs, like Millicent, are already using their training to advocate for accessible facilities. “I am a CHW and an advocate,” Millicent says. “I can use this training to advocate for inclusive facilities–to have the right latrines, wheelchair accessible corridors, accessible counter heights, and even signage.”
But there is still much work to be done–and CHWs have a role to play in advocating for disability justice throughout the health system. As John Oyugi, Program Associate at Lwala, reflects, “When we move together, we change together–and make our community even more whole.”
“When we move together, we change together–and make our community even more whole.”
This work wouldn’t have been possible without our essential partners: LVCT Health, Joseph Etyang, Stephene Maende, and the Bayer Foundation.
