Equipping Community Leaders to Support and Include Children with Disabilities
Kupenda's community leader trainings reduce harmful beliefs and practices while improving care and inclusion for children with disabilities
In addition to raise awareness and reducing negative stigma, Kupenda’s advocacy programs inspire local leaders to help children with disabilities access the medical care, equipment and supplies they need to reach optimal health and wellness. We work to ensure these medical services are high-quality, consistent, timely and tailored to the child’s unique needs.
In many African nations, people with disabilities are considered to be cursed by God. Due to this perception, some parents hide, abandon, or even kill their children. Today, only 10% of people with disabilities in Kenya attend school, while countless others are unable to access care and support services. This short film depicts the realities these children face and the work Kupenda for the Children is doing to help them access the health care, education, and social inclusion they need to thrive.
Kupenda supports school-aged children who have long-term disabilities including physical, cognitive, sensory, and emotional health issues. Some examples include spinal chord injuries, paraplegia, cerebral palsy, Down syndrome, blindness, post-traumatic stress disorder, seizure disorders, autism, depression, deformed or missing limbs, muscular dystrophy, etc. The child in this photo is one of our beneficiaries who was born deaf and received education and sign language training through Kupenda.
What problem does your idea solve?
In Kenya, community leaders have a strong influence on community beliefs and practices. Although some support and advocate for children with disabilities, many others conduct harmful “healing” practices and share inaccurate information that encourages discrimination, neglect, abuse or even murder of these children. Many of these leaders also encourage families to pursue other remedies instead of medical care, leading to increased morbidity and mortality among children with disabilities.
Explain your idea
Kupenda is developing workshops that train community leaders on disability definitions, causes and treatments and the needs and rights children with disabilities. Although the workshops are tailored for each group, all 3 trainings include participatory presentations and discussions about disability, with an emphasis on global legislation (i.e., the UN Convention on the Rights of Persons with Disabilities) and local laws (i.e., national and county-level Persons with Disability Acts) to help participants understand their legal mandate to protect the children with disabilities. Our workshops also include testimonials from people with disabilities from within the participants’ communities to help convey the reality, urgency and proximity of disability justice needs. At the end of the trainings, our facilitators help participants develop Specific, Measurable, Achievable, Realistic and Time-bound action plans that guide them in replacing harmful beliefs and practices with scientifically accurate information and appropriate care and referrals for children with disabilities. In the months following each workshop, we contact group representatives from each training to support action plan implementation and long-term sustainability of safe, inclusive practices. We are also exploring income-generating training for community leaders who may experience reduced income when they refer those with disabilities to medical clinics for care.
#1 of 5 - Kupenda's Community Leader User Experience Map
#2 of 5 - Kupenda's Community Leader User Experience Map
#3 of 5 - Kupenda's Community Leader User Experience Map
#4 of 5 - Kupenda's Community Leader User Experience Map
#5 of 5 - Kupenda's Community Leader User Experience Map
As shown in this photo, Kupenda's advocacy workshops are highly participatory. By involving attendees in discussions and asking them to lead various exercises, we fully engage them in developing new knowledge, skills and attitudes in relation to disability issues. Experience sharing, group discussions, and customized action planning also help personalize the workshop content and ready our participants for acting on behalf of those with disabilities in their communities.
Incorrect beliefs often pose greater challenges for children with disabilities than their physical limitations. When we facilitate discussions about disability with community leaders (such as the traditional healers shown here), they often develop a more accurate understanding of the causes of disability and the issues impacting children with disabilities. Many then work to teach others what they've learned and provide innovative strategies to make their communities more inclusive.
In our first year, 240+ community leaders will complete Kupenda's disability training and use the knowledge and skills they gain to reduce stigma and replace harmful practices (i.e., burning, cutting, exorcisms) with effective care, counsel and referrals. These changes will improve the health and education access and outcomes and social inclusion for 2,700+ school-aged Kenyan children with long-term disabilities. We will then disseminate our refined model to partners beyond Kenya.
Kupenda’s advocacy activities have helped thousands of children with disabilities (like those shown here) to access the nutrition, education, medical care, and legal rights they deserve. Children who are healthy and fully included in all aspects of their communities also become a source of advocacy – they show others what is possible with appropriate support and adequate resources.
How is your idea unique?
Although much research has been conducted on community leaders' social influence and many programs have engaged such leaders in advocacy and education initiatives, Kupenda's is the first to train these leaders on the biological, legal, and social factors that impact children with disability and call on them to take the lead in improving the disability landscape in their communities. To do this, we not only correct these leaders' misconceptions and harmful practices but also celebrate their accurate knowledge and useful practices. The program does not exist in isolation but is part of a broad spectrum of community-based interventions we implement to gradually shift disability norms among chiefs, teachers, parents, women's groups and nonprofits. Kupenda's advocacy programs have been developed and refined over 14 years through continuous evaluation and testing and with consistent, impartial financial support from philanthropists and private foundations in the US and Kenya.
Tell us more about you
Since 2003, Kupenda (“love” in Swahili) for the Children has been equipping children with disabilities to achieve their full potential through advocacy, education and medical care. We are a US 501(c)3 and with a Kenyan field office, Kuhenza for the Children. Kupenda supports fundraising and program design, while Kuhenza supports culturally-sensitive, locally-led implementation. We are seeking partnerships and professionals to help us develop and expand this training program in East Africa.
Kupenda began in 1999 when Cynthia Bauer visited Kenya and learned she might have been killed if she was born there because she lacked a left hand. Cynthia then met Leonard Mbonani, a Kenyan special needs teacher who introduced her to impoverished children with disabilities. Cynthia and Leonard began working together to support these children. Over time, they saw that the impact of their work and response from their networks was so positive that they formed Kupenda in 2003 and Kuhenza in 2008.
This short film describes the challenges faced by children with disabilities in Kenya and provides a brief overview of how Kupenda for the Children is working with local leaders and communities to support these children and improve the disability care and inclusion landscape in Kenya.
What are some of your unanswered questions about the idea?
Thus far, we have held 23 community and 3 traditional healer trainings. We are still researching to determine the best content for the supplemental leader training. Although we are developing these trainings alongside a skilled team of African professionals, community leaders, and individuals impacted by disabilities, we are still pilot testing the program to develop the most effective content, delivery models, and monitoring and evaluation strategies. We are also working to determine the program's impact on the participants, their communities, and individuals impacted by disability and assessing its cost-benefits. Finally, we are determining best practices for disseminating of the model and its results through partnerships in East Africa.
Where will your idea be implemented?
Experience in Implementation Country(ies)
Yes, for more than one year.
Expertise in Sector
I've worked in a sector related to my idea for more than a year.
We are a registered non-profit, charity, NGO, or community-based organization.
Piloting: I have started to implement my solution as a whole with a first set of real users.
How has your idea changed based on feedback?
Interviews with our Kenyan beneficiaries, facilitators and advisors led us to expand our training content to include: 1) disability testimonies and data from the participants’ communities to personalize content and convey urgency 2) information on disability prevention during pregnancy/labor and through early identification/referrals to save lives and reduce costs 3) CPR training to affirm and improve participants’ skills 4) use of visual aids and videos to support scientific explanations.
At our last community workshop, Cynthia Bauer, our Executive Director, and a community member shared about what they have experienced living with their disabilities. During the Feedback phase, our workshop advisors suggested we incorporate more of these testimonials into our trainings, especially from people in the participants' communities, in order to emphasize the reality and urgency of disability needs. We are now revising our training and planning strategies to incorporate this addition.
Community raising hands to indicate that they don’t believe someone can play the guitar with one hand. After this vote Cynthia led the group in a Swahili song while she played her guitar with one hand. She then shared her testimony showing that people with disabilities can achieve many things if provided with services and support. Based on suggestions from advisors during our Feedback Phase, we plan to include more training activities that emphasize the abilities of people with disabilities.
A traditional birth attendant (TBA) sharing her experience delivering infants with disabilities while Kupenda and Kuhenza’s Executive Directors as her fellow workshop participants listen. Data we collected during the Feedback phase indicated the need to reach more women of reproductive age with correct information about disability prevention and early intervention. We are working now to incorporate this content into our traditional healers trainings, which are attended by many midwives and TBAs.
A community member developing action plan to support children with disabilities in his community during Kupenda's workshop. During our Feedback Phase, some interviewees suggested we do more to acknowledge the contributions of representatives who follow-up with these participants to ensure they implement their action plans and who provide update reports to Kupenda. In addition to the stipends we provide, they also requested notebooks and Kupenda-branded t-shirts for these representatives.
A traditional healer sharing his view that disabilities are caused by infidelity. Others in this workshop said they believed contraception, thorns, and demon possession caused disabilities. During the Feedback phase, our workshop advisors suggested that we present more scientific explanations about disability causes and cures, rather than discussing traditional beliefs and practices, to reduce the risk of tension, disagreement and defensiveness from traditional healer participants.
Group discussion at Kupenda’s last workshop in January of 2017. Discussion topics include question such as, “What do you believe causes disability?” and “What do you believe about healing in regards to disability?” During the Feedback Phase our advisors suggested we include more videos and visuals in our workshops to supplement these discussion and better explain the scientific aspects of disability causes and treatments.
Action plan presentations at Kupenda’s last traditional healers workshop in January of 2017.
During the Feedback phase, our advisors suggested we prepare data on disability prevalence and morbidity/mortality from the workshop participants’ communities. Interviewees believed this data would help to personalized the training content and inspire the participants to more actively implement their action plans. We are now working to incorporate this suggestion into our workshops.
We also heard a lot of feedback on community leaders’ reluctance to attend trainings due to fear of arrest for witchcraft, theft of their traditional remedies, judgment from Christians and the educated, and loss of income during training time and from referrals vs. treatment. In response, we implemented a stipend for workshop attendance, a new community-entry and invitation model, training content on alternative income-generating strategies and confidentiality/security protocols for participants
Who will implement this idea?
Project operations and funding will be managed by our U.S.-based Executive Director. Our Kenyan Director and Project Officer will facilitate the trainings and support data collection to inform program improvements and expansion. Local chiefs and community leaders who have partnered with us for years will support community entry and participant recruitment and follow-up. Our U.S.-based Development Director will write, revised and disseminate project outcomes and resources for program scale up.
Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?
Kupenda and Kuhenza work closely to develop, implement and assess our strategic plans and budgets and to revise these as needed. Our U.S. and Kenyan Executive Directors speak weekly to review operational goals, address challenges and update programmatic strategies, based on available data and feedback from staff, beneficiaries and supporters. Major operational modifications are presented to the Kupenda and Kuhenza Board of Directors for feedback and approval prior to implementation. This regular communication and openness to change has allow our work to stay modern, refined and locally-led. Most recently, it has also allowed us to update our community leader training content and delivery approach, based on the feedback we collected from beneficiaries and supporters for this Challenge.
What is it that most attracted you to Amplify instead of a more traditional funding model?
Although we’ve pilot tested our community leader trainings, we now must assess and refine the model and delivery strategy so we can expand our impact. To do so we need investors, like Amplify, who provide not only funding, but also design support and who value beneficiary input. We are grateful that Amplify supports Kupenda's efforts to make our beneficiaries our leaders and design partners. This keeps our work culturally appropriate, locally-led and positioned for substantial, long-term impact.
What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?
1) Although community leaders are often highly-respected by their communities, many are impoverished due to the poverty of those they serve. Tithe and client fees are often meager and many of these leaders are uneducated, making income diversification a challenge.
2) Traditional medicine has permeated African society for centuries and is practiced by most citizens, even those who claim Christianity or Islam. While some traditional practices are helpful, many cause harm and even death. Awareness of these harmful practices is growing and causing traditional healers to be arrested, replaced by modern practitioners, or forced to close their practices. These realities have created fear, suspicion, secrecy and competition among healers, which limits their willingness to work openly with others.
Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?
- By 2022, we aim to improve medical outcomes among 50,000 children with disabilities by educating and empowering 15,000 community leaders (5,000 directly in Kenya and 10,000 through global partnerships) to effectively advise, treat and refer families impacted by disability.
- How do we measure the short and long-term impact of our community leader trainings and incorporate that data into evidence-based program modifications that will support improved health for 20,000 children each year?
How long have you and your colleagues been working on this idea together?
How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?
Between 5-10 paid, full-time staff
Is your organization registered in the country you intend to implement your idea in?
We are registered in all countries where we plan to implement.
My organization's operational budget for 2016 was:
Between $100,000 and $500,000 USD
If your team/idea/organization has a website, please share the URL below.
Kupenda was registered in the U.S. in 2003 and created a partner organization in Kenya in 2008, called Kuhenza. Kuhenza works with local leaders to help thousands of children with disabilities access education and medical care each year. Kuhenza’s Board and staff keeps our work culturally sensitive, locally-led and federally recognized within Kenya