Tales of Mothers of Children with Special Needs in Northern Uganda

Poverty and disability are interlinked and addressing social economic challenges of caregivers of children with disabilities directly in improves their well and quality of care they provide for their children. AVSI is a PO in Northern Uganda and as such they have firsthand experience on how communities suffer from the brunt of stigmatization from their community and sadly from their families as well after giving birth to a child with disability.

AVSI through the child empowerment program mobilized 11 caregivers of children with disability in January 2020 into 2groups of 5 and 6 members who all live close to each other and the groups were named “Rubanga Miyo” meaning “God who gives”. The group members were brought together to address the challenges of income, stigma and discrimination they had pushed most of the parents from their families and from their villages. All these women once lived with their families in their villages but had been pushed to live in the urban areas where they had to rely on themselves to survive away from the communal way of living in most villages. However for caregivers without Education and a good social network living in an urban area comes with its own challenges that include; locking children in the house to go out and look for work, paying rent and other utilities.

Organizing these women into a group, they have been able to get a trusted friend with a similar problem, share their stories, get hope, renewed strength in the new social group and get a sense of belonging. In the group, the women have come together to discuss personal issues and talk about working together as friends. The support they get from AVSI for their children such as assistive devices, medication and therapy at their rehabilitation facilities and home based care was key in bringing them together. Through several meetings and trainings by the AVSI staff, caregivers have been encouraged and have since decided to embrace and openly seek for ways to give their children a better life just like any other child. Besides meeting and discussing about their issues, caregivers had real challenges meeting the basic needs of their children and family members such as food, clothing and care. AVSI worked with the two groups and trained them on how to select, plan and manage an Income Generating Activity of their choice. Through the training, the caregivers selected baking as their project and in July 2020, AVSI facilitated these groups in a practical training of making pancakes (mandazi), half cakes and doughnuts and they received materials and equipment from AVSI to start their business.

By December 2020 the group had saved 800,000/= (Eight hundred thousand shillings only) from their profits and group members are borrowing from this saving to invest in the personal businesses. One caregiver in particular borrowed from the group and is able to go to a nearby village buy vegetables and sale at a profit. In this time the staff of AVSI have informed us that they have observed positive changes in the health status of children and hygiene at their homes. The parents informed us that they feel more valued by their community members as they do not borrow like they used and are able to meet some of the basic needs of the children like buying soap and food. The group members expressed to us the challenge of baking at a family member’s place who is renting. This fear the landlord will start asking for rent as he will assume they are making a lot of money. AVSI is now working to link the group to with other stronger savings groups for continued learning and growth