The hidden weight of raising a child with developmental disabilities in Ghana

"Some days I take her along to meetings. I leave her in the back of the car with the windows rolled down," confesses Hannah on caring for her 13-year-old daughter Eyram, who has had cerebral palsy since birth.

For every one of those years, Hannah has been the only person responsible for her care, not because no support exists in theory, but because formal support is scarce and social norms leave her carrying most of the caregiving burden. 

Considering and not complaining, Hannah continues: "I manage marriage and mothering three children."  

Hannah's story echoes the reality of many others. In Ghana, approximately 8% of the population (about 2,098,138 individuals) live with some form of disability. For many caregivers—mostly women—raising children with developmental disabilities, this unpaid caregiving work has become increasingly complex over time. Their challenges have evolved from coping with name-calling and stigmatization to addressing more intricate issues related to human rights, access to education and financial pressures. 

The African Center for Democracy and Socioeconomic Development (CDS Africa), alongside the Center for Learning and Childhood Development, and women’s rights organization Songtaba have been gathering evidence to understand the needs of caregivers of children with developmental disabilities and understand policy pathways to change under Ghana’s Inclusive Education Policy.  

This research is supported by Scaling Care Innovations in Africa, a five-year partnership between Global Affairs Canada and IDRC to transform unpaid care in sub-Saharan Africa. 

A different kind of caregiving

A typical day for Hannah begins early with getting her younger children ready for the school bus. And when Eyram wakes, she washes, changes and feeds her—tasks that would not exist for a teenager without disability.   

Between care rounds, she manages household chores and prepares lunch, all while holding a full-time remote job. "There are times I have meetings outside the home, and that becomes a real challenge," she says. 

Unlike general childcare, which lessens as a child gains independence, care for a child with a developmental disability is continuous, often increases over time and rarely fits the fixed rhythms of work or daily life.  

It requires skills most caregivers are not trained for: therapeutic support, behavioral management, medical monitoring and advocacy within a system that often fails to recognize the child's needs.  

Urban caregiving vs rural realities

The care burden is not evenly distributed. In the capital, Accra, families like Hannah's face a different kind of isolation than those in Tamale or the rural North due to lack of care-responsive public infrastructure. 

“Eyram has been to public, private and specialist schools. She doesn't fit into the school system," Hannah says. Eyram is now homeschooled, a solution only made possible by the flexibility of her mother’s remote work and unavailable to most. 

In the rural North, the situation is starker. With little diagnostic or therapeutic care available, specialist services are concentrated in Accra and Kumasi—places most families cannot repeatedly reach, if at all. Community stigma adds to the isolation. In Tamale, caregivers—especially mothers—describe hiding their children from community life, keeping them indoors to avoid the attention disability still attracts in many neighbourhoods. 

Abdul Kasiru, head of programs and policies at Songtaba, describes the particular shame associated with developmental disability in ways that differ from physical disability.  

“While a child using a wheelchair may be pitied, children with autism or intellectual disabilities are more often discussed in hushed tones or framed through spiritual beliefs that place blame on the family.”  

Through the IDRC funded project, Songtaba has been working to shift those norms directly through community dialogues, family training sessions and an ongoing radio program that reaches caregivers who cannot attend in-person events. 

The cost of care on women’s economic lives

 The consequences for caregivers compound quickly. The most consistent finding across the project's research confirms most caregivers who are women leave their jobs to provide the daily care their children require, with no formal support, accessible respite services or reliable caregiving alternatives.  

“When women have children with disabilities, they don't think twice about choosing to take care of them or continuing with their paid work,” says Boateng. “For many Ghanaian women, they would rather quit their jobs and take care of their child with disability because that is the only way to ensure that the child receives adequate and quality care”.  

When unpaid care falls disproportionately on women, it restricts their economic participation, limits social mobility and entrenches inequality across generations.  

For caregivers of children with developmental disabilities, that restriction does not ease as the child grows older or enters school. It’s structural. And without intervention, it’s permanent. 

"It's very difficult navigating it alone," Hannah says. "I want to do other things besides just being stuck with my child." 

What the research is trying to change

Ghana has a national policy on inclusive education, but its implementation has been inconsistent and children with developmental disabilities remain largely excluded. 

The project is producing evidence on specific gaps in teacher training, school infrastructure and eligibility classification systems and bringing that evidence into active dialogue with agencies responsible for implementing the policy.  

 The project is building the case for Ghana-specific recommendations within ARISE, connecting its findings to a broader continental conversation about what accountable care policy looks like. 

 “The ARISE framework emerged from stakeholder engagements to validate our research findings and identify priorities for the next phase of the work.” says Boateng. “As we engaged policymakers on the implementation of Ghana’s Inclusive Education Policy, stakeholders such as the Ghana Disability Federation highlighted advocacy, reform, inclusion, support and empowerment as the areas where they wanted us to concentrate our energies.”  

What the future looks like

 Hannah knows exactly what she needs: "There should be professional caregiver training courses or programs in Ghana for people to take up as a career," she says. "There should be hubs where you can leave your child."  

 Her request points to a gap that research is documenting: caregivers need reliable services, trained support and systems that allow them to participate fully in economic and social life.  

 “For the next few years, if a mother has a child with disability and she doesn't carry the burden alone, I will be fulfilled. If a child with developmental disability is allowed to participate with other children, I’ll be fulfilled,” says Boateng.  

The research is ongoing, but the families have already spent years waiting for a system to catch up with what they have always known. The question the project is pressing is not whether Ghana has the evidence to act, but whether, this time, the evidence will be enough.

Main image credit: Kofi Dotse