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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

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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.

Who benefits?

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.

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.

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?

  • Kenya
  • Tanzania

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.

Organizational Status

  • We are a registered non-profit, charity, NGO, or community-based organization.

Idea Maturity

  • 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.

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?

  • More than 2 years

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:
http://kupenda.org/
https://www.facebook.com/kupenda/
https://twitter.com/kupenda_org
https://www.instagram.com/kupendaforthechildren/

Kuhenza:
http://kuhenza.org/
https://www.facebook.com/Kuhenzaforthechildren/

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
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Attachments (4)

Kupenda Disability Guidebook for Kenya .pdf

For many Kenyans, it is difficult to access accurate literature about disability and books carrying such information are often expensive and written in a language understood only by professionals. In response, Kupenda for the Children developed this guide which describes common disabilities, their characteristics, causes and treatment in simple language which can be understood by lay people. We distribute these during our advocacy workshops and to those who visit our resource center.

Kenya Disability Law Guidebook_020717.pdf

Written in simple English by Kupenda staff and professional legal consultants, the "Kenya Disability Law Guidebook" offers a legal framework for understanding and responding to questions related to the rights of children with disabilities in Kenya. It provides a one-stop reference to help readers understand the current laws related to General Rights, Caregiver Rights, Healthcare, Employment and Financial Assistance. We distribute this to our beneficiaries and advocacy workshops participants.

KUPENDA_Brochure.pdf

This brochure provides a brief overview of Kupenda for the Children's history, staff, programs and impact.

Kupenda Advocacy Program Brochure 2017.pdf

Since the greatest barrier to assisting children with disabilities is a lack of awareness, Kupenda commits the largest percent of its budget to activities that educate communities about disabilities. When community members and local leaders have a better understanding of the issues impacting people with disabilities, they often provide innovative strategies to make their communities more inclusive. This brochure describes Kupenda's Advocacy Program model and the impact it is having in Kenya.

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Jessica Charles and Team - Congratulations again! Check out this blog post highlighting the winners of this Challenge: https://challenges.openideo.com/blog/disability-and-inclusion-challenge-winning-ideas-announced

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