Supporting children with disabilities in Malawi
Research at district level in Malawi suggests that information sharing by support agencies in the right way will significantly enhance the impact of special education in low-income countries. Anita Soni reports.
Global research (Olusanya, 2020) estimates there are about 53 million children aged under 5 years who have developmental disabilities. Ultimately, such children are at high risk of premature death, especially in low and middle-income countries where the prevalence is highest and societal attitudes towards disability are often negative and stigmatising.
Disabled children also often have needs that require different types of health, social welfare and educational interventions. Inevitably several disciplines will be involved throughout their lives. Malawi, the focus of our research funded by UK Aid, is one of the world’s least developed countries with high levels of poverty, food insecurity, malnutrition and about half the population living on less than a $1 a day. Recent research (Murphy et al, 2020) has highlighted that between 11 and 30% of children at nurseries, known as Community Based Childcare Centres (CBBCs) in Malawi, have a developmental delay or disability.
Vulnerable children and the need for coordinated support
When working with disabled children, disciplines such as health, education and social care often operate separately, in isolation and do not interact with each other. This can create a lack of continuity in services for the children, poor coordination and families being unsure who to contact. A transdisciplinary approach, one in which families access co-ordinated services for their children, tailored to their needs has a much higher chance of making effective interventions. The World Health Organisation (WHO) recommends that comprehensive, responsive services should offer coordinated early childhood intervention for developmentally vulnerable children including those with disabilities. Health professionals, educators, social workers and others therefore have a critical role in referring cases to each other, sharing information, coordinating interventions and maintaining ongoing contact with disabled children and their families. In order for this to work, health, education, social and family welfare, employment, justice and other relevant agencies need to develop strong links with each other.
Transdisciplinary models of support
In a transdisciplinary model of intervention, professionals cross their own role boundaries when working with families as part of a coordinated team, sharing information, creating shared goals and delivering support needed by the family. Where feasible, one professional is the primary service provider, the ‘key worker’, who acts as a channel for the rest of the team who remain involved as and when needed.
Developing coordinated support for families in Malawi
A team of researchers from the Universities of Birmingham, Glasgow, Malawi, The Catholic University of Malawi and Kamuzu University of Health Sciences have been working as a multidisciplinary team on a project entitled ‘Tiphunzire (Let’s Learn)’. One aspect of the project is to examine how different disciplines can work together in Chiradzulu, a district of Southern Malawi.
Barriers to transdisciplinary intervention in low-income countries
The project began by looking at the existing research about disabled young children and their families in low-income countries. Although the literature was limited and there were some positive case studies and examples, the findings highlighted a range of barriers to transdisciplinary working. This includes the impact of poverty, the extent to which people in low-income countries understand disability, discrimination and stigma alongside a lack of experienced personnel.
Surveying existing practice in Malawi
The next stage involved focus group discussions with the key district officers for health, education and social welfare who work within Chiradzulu, who were questioned about how children with disabilities are identified in the early years, how the referral processes operated, the transition to school from home or CBCCs and how the placement system (where children are placed for education such as special schools and mainstream schools) worked. The word cloud below highlights the key words that came up in the focus group discussion. As expected key words included children, education, welfare, health, disabilities, schools, learners, caregivers (adults who work in CBCCs), social, support and needs. But the word that has interested us all is ‘information’.
Outcomes highlight the central role that information plays for the different agencies disciplines supporting disabled children and their families. Indeed, ‘information sharing’ is key to moving towards successful transdisciplinary work. When there was more information, agencies felt more effective. One social welfare officer noted:
‘…whenever we have information concerning children with disabilities, we referred them directly, instead of referring to health (or) to education’
The focus group concluded with a suggestion for coordinating interventions at the district level.
The research to date, has implications for agencies working in similar situations around the world, and highlights the value of simply bringing people together. This in turn has led quickly to potential solutions, the most important of which appeared to be information sharing across disciplines and between agencies. As a result, one of the next steps of the project is to set up a transdisciplinary technical working group to help identify practical ways of coordinating interventions to support children with disabilities in Chiradzulu – an apparently simple step with profound implications for the disabled children of Malawi.
Researchers working on the Tiphunzire! (Let’s Learn) project are Anita Soni, Jenipher Mbukwa Ngwira, Marisol Reyes Soto and Paul Lynch from the Universities of Birmingham, Glasgow, Malawi, The Catholic University of Malawi and Kamuzu University of Health Sciences .
Support Images kindly provided by Jenipher Mbukwa Ngwira