Usually, the main carers for children with disabilities are the family members, who often have access to very few services able to provide family and clinical support. This puts these families under enormous strain. There is a large and growing need to empower and strengthen families of children with disabilities, in order to help them maximise health and well-being of their children. SEP, funded by Misereor, has developed innovative approaches that promote health and well-being of children with disabilities in low resource settings. The organisation, through the Wezesha (empowerment in Kiswahili) project, identifies training areas that give children with developmental disabilities, and their families, an increased opportunity to thrive. Furthermore the project is working on enhancing the communities’ understanding of the rights of children with disabilities and is promoting inclusion at school and the community.
The programme aims at fostering parents, community workers, and teachers in their role as caregivers and multipliers, in order to transfer skills and information about care for children with disabilities. It targets specifically communities in remote areas where access to health services and therapeutic support is inadequate. During the one week training, participants learn practical skills, how to help their own children with disability as well as become peer educators to share their knowledge to help other parents in their community.
Click here to see a list of the topics handled in the Wezesha Programme.
The Wezesha has shown great impact on the beneficiaries. There is general improvement in the health conditions of the children and children achieve milestones which results in improved quality of life. The Wezesha programme also has a significant improvement in the quality of life of the parents and caregivers. Caregiver attitudes towards the children improve as understanding of the condition increases; this often results in greater patience in caregiving and acceptance. There is furthermore a significant improvement in caregiver reported knowledge and confidence in taking care of their child with disability. Parents report improved interaction with their children due to acceptance and improved communication skills.
Children who have mild disabilities have joined regular schools thanks to the presence of teachers at the workshops. Some progress has been made through the training programme which empowered the parents, teachers and community health volunteers to create awareness in the communities and promote the rights of children with disabilities. The awareness creation has reduced the association of disabilities with witchcraft which contributed to social exclusion of children with disabilities and their families. Caregivers, who are primarily mothers, were socially excluded within their families. At the moment the mothers report a slight change in attitude towards them and the child within the family.
After the training the peer educators need to identify other families and form support groups. Overall there has been extremely positive response to the establishment of the support groups by the participating parents. Currently there are 16 support groups. The support groups have varying strengths depending on the commitment of the peer educators and whether or not they are receiving further support from the diocese. The support groups serve to reduce the sense of social isolation and exclusion of parents. It offers a platform to provide psychosocial support to parents, and a safe place to share experiences. SEP in partnership facilitates registration of children with disabilities and support groups which in turn facilitates access to government funds.