Inclusion on Paper, Inclusion in Practice
Zambia has made important progress in recognising disability as an issue of rights and development. The country has the Persons with Disabilities Act of 2012 and, more recently, launched the 2025 National Policy on Persons with Disabilities and National Disability Mainstreaming Guidelines. The Government has described these frameworks as a means of addressing barriers to education, healthcare, employment, accessibility and participation.
Yet having a policy framework does not automatically create an inclusive society.
A 2025 UNICEF disability budget brief noted that persons with disabilities in Zambia continue to face barriers to education, healthcare, employment and social protection. It identified challenges including stigma, weak enforcement of disability legislation, limited institutional coordination and inadequate funding.
This gap between what is recognised in policy and what people experience in everyday life is perhaps one of the most important questions in the disability inclusion conversation.
For people with Down syndrome, the challenge can be even more complicated because inclusion requires more than physical access. It requires understanding, appropriate teaching approaches, family support, communication, reasonable accommodation and opportunities to participate.
The Down Syndrome Foundation has found one example of this gap through its engagement with teacher training institutions.
According to Kambonyi, teachers being prepared to work with learners with disabilities are not always exposed to the full range of disabilities. Training, he said, tends to focus heavily on visual, hearing and physical impairments, leaving less attention for conditions such as Down syndrome.
That creates a difficult contradiction.
A child can be admitted into a school and technically be included, but still struggle if the teacher does not have the knowledge or tools to support them.
UNICEF’s analysis of disability rights in Zambia similarly identified teacher capacity, inaccessible learning environments, limited resources and incomplete implementation of inclusive education policies among the barriers affecting learners with disabilities.
Inclusion, therefore, cannot simply mean allowing someone into the room. It must also mean creating the conditions that enable them to participate once they are there.
From Awareness to Participation
This is where the work of the Down Syndrome Foundation becomes important.
The organisation currently works in Lusaka and Copperbelt provinces and has about 200 members across the country. Its work focuses on creating awareness about Down syndrome, advocating for disability inclusive policies, working with people with disabilities and supporting families.
For parents, some of that support is practical. The Foundation assists families in advocating for the waiving of school fees for children with Down syndrome and provides counselling to parents.
These interventions may appear small when compared with national policy commitments, but they address the everyday barriers through which exclusion is experienced.
A parent who does not know where to seek help can be left to navigate the system alone. A child may have the right to education but still face barriers in accessing it. A family may receive a diagnosis but have little information about what comes next.
Community based organisations can help bridge that gap by taking disability conversations beyond institutions and into the spaces where people live.
The Foundation is also trying to shift the conversation from speaking about people with disabilities to working with them.
That distinction matters.
Inclusion is not simply about creating services for people with disabilities. It is also about recognising them as participants, advocates and contributors whose experiences should shape the decisions being made about their lives.
What Change Looks Like
The Foundation’s work is increasingly extending beyond awareness and family support into institutional advocacy.
One of its recent achievements, according to Kambonyi, has been the signing of a Memorandum of Understanding with the Ministry of Health. The organisation has also participated in the drafting and finalisation of the African Disability Protocol.
These developments point to a shift in the role of organisations such as the Foundation. They are not only responding to individual families. They are also trying to influence the systems that determine whether those families are included in the first place.
That work matters because disability inclusion is not a single sector issue.
It affects how children enter and experience school. It affects access to healthcare. It affects employment and livelihoods. It affects whether people can participate in community life and whether their voices are heard in decisions that affect them.
Zambia's current policy direction recognises this broader picture. The 2025 National Policy on Persons with Disabilities calls for disability to be mainstreamed across social, economic, cultural and political spheres. Government has also acknowledged that meaningful inclusion requires changes to systems and attitudes, not simply isolated activities.
The challenge now is turning those commitments into everyday experiences.
The Question Is Not Whether People Belong
The Down Syndrome Foundation wants to expand beyond Lusaka and Copperbelt provinces and reach more communities across Zambia. That ambition reflects a reality that awareness and support cannot remain concentrated in a few locations if inclusion is to become a national experience.
Kambonyi's journey demonstrates how personal experience can become collective action. What began with one father confronting stigma has developed into an organisation advocating for families, engaging institutions and pushing for systems that recognise people with Down syndrome as part of society rather than as people on its margins.
But the broader lesson goes beyond the Foundation.
The measure of inclusion is not simply whether a policy exists, whether an awareness event has been held or whether a person with a disability has been admitted into a school or service.
The more difficult question is whether they can participate, contribute, make choices and be treated with dignity once they are there.
Perhaps that is where Zambia's disability inclusion journey needs to focus next.
Not simply on making people with disabilities visible.
But on making sure there is room for them to fully belong.
To contribute to the discussion, please feel free to reach out via info@zgf.org.zm
What followed was not simply a decision to support his own family. In 2011, Kambonyi started what would become the Down Syndrome Foundation, formally registering it as an organisation in 2012.
