Empowering Parents and Communities: Strengthening Leadership for an Inclusive Future
“It takes a village to raise a child, but when you have a child with a disability, it’s you alone,” shared one mother of a child with a disability in Zambia, capturing the profound isolation many families face. On the International Day of Persons with Disabilities (IDPD), we are reminded that this isolation is not only emotional but also deeply systemic, affecting access to education, health and rehabilitation, livelihood, and social support services.
But there is hope. Empowering families, particularly parents, to take leadership roles in their communities is a critical step toward building a more inclusive world. This year’s IDPD theme, “Strengthening the Leadership of Persons with Disabilities for an Inclusive and Sustainable Future,” carries a powerful message: individuals with disabilities are not just recipients of aid—they are essential agents of change.
At Liliane Fonds, we see this leadership every day in the parents of children with disabilities. These parents are the true experts on their children’s needs and, more importantly, they are the voice of their child. Their lived experiences equip them to advocate for meaningful change, making them vital leaders in the push for an inclusive society.
Overcoming Isolation: The hidden struggles of families
In many parts of the world, families of children with disabilities face not only systemic barriers but also cultural and social stigma. In communities where disabilities are seen as punishment or witchcraft, families are often ostracised. These families fight not just for access to services but against deeply ingrained societal beliefs that marginalise them.
These social, economic, and cultural barriers underscore why empowering local communities is crucial. Every country, culture, and community has its unique challenges, and there is no one-size-fits-all solution. Only by being driven by local voices can we create tailored, sustainable solutions.
The CBR Approach: Local solutions for local problems
At Liliane Fonds, we believe in the power of Community-Based Rehabilitation (CBR), which places local stakeholders—especially families—at the heart of decision-making. This approach ensures that solutions are rooted in the lived experiences of those they aim to serve. By connecting community stakeholders such as families, traditional and religious leaders and duty bearers, the force is driven from the village, and families of children with disabilities no longer stand alone.
In these communities, parents don’t just receive support—they become leaders. Many parents who initially sought help for their own children have transitioned into roles as CBR field workers and strong parent support group members, leading their communities’ future and supporting other families.
Take the story of Espérance, a mother of a daughter with a disability from one of Liliane Fonds’ projects in Rwanda. After becoming a fieldworker and completing a CBR training, she gained skills to support her daughter Sifa, and has since become a trainer herself, empowering other parents. Through her work, she’s not just sharing knowledge—she’s instilling hope in communities where it was once scarce. Espérance’s transformation demonstrates that change is possible, even in the face of adversity.
Parents as leaders: Moving from advocacy to action
Especially for young children and children with severe disabilities, parents are often their child’s primary voice. They are deeply attuned to their child’s likes and needs, and understand the unique challenges of raising a child with a disability—challenges that extend far beyond physical care and services. The CBR approach recognises this expertise, empowering parents to take on awareness-raising and advocacy roles. With the right support, parents can advocate not only for their own children but also create a ripple effect of change that benefits the wider community.
Building networks of support: collective action for change
The power of CBR extends far beyond individual families—it’s about building a network of support that drives lasting change. Angelique Kester, Technical Advisor for Rehabilitation and CBR/CBID at Liliane Fonds, explains how the CBR project in Zambia was initiated and driven by local stakeholders. A coalition of ministries, the national parent support group, the Zambian National Disability Rights Watch, and local NGO’s took the initiative to sit together to address challenges faced by children with disabilities. They identified concrete problems and developed a plan and solutions collaboratively. One local leader said, “By taking charge to build a coalition for inclusion, we’ve been involved from the start. We feel ownership of this project—it’s not something imposed on us; it’s something we’re building together.”
The ultimate goal, shared by Liliane Fonds and the United Nations, is to extend these efforts beyond local communities to sustainable workforces, and influence national policy. In Cameroon, for example, the Ministry of Social Affairs includes several social workers who participated in the social worker training, specialized in CBR. They successfully lobbied for key changes: advocating for the official recognition of the training within the Ministry and for the integration of disability inclusion into national policy discussions. Similarly, in Rwanda, the Ministry of Local Affairs is revising job descriptions for para-social workers to include disability-related responsibilities. Community volunteers now receive reimbursement from the government, and efforts are underway to further embed disability inclusion into national frameworks. Additionally, tools developed under the Liliane Fonds-supported CBR project to identify and assess children with disabilities have been adopted by the national government for use across the country. This kind of systemic impact—driven by local leadership—is what sets the foundation for broader, lasting change.
CONCLUSION: Leadership rooted in experience, Shaping the future
As we reflect on the International Day of Persons with Disabilities, we are reminded that true leadership comes from all parts of society—not just from policymakers or experts, but, first and foremost, from parents, caregivers, and local community members. At Liliane Fonds, we are committed to empowering these local leaders to drive change in the lives of children and youth with disabilities and help shape the future of inclusion.
The future of an inclusive world will be one where the voices of families, local leaders, and people with disabilities are heard at every level of decision-making. When parents lead from their lived experiences and when communities unite, we lay the foundation for a more inclusive and sustainable future for families of children with disabilities.
Learn more about Liliane Fonds’ CBR approach and get involved
this article was written by Laura D’Haese