As Chance for Childhood’s Community Mobiliser in Rwanda, I work with families and community members to create an inclusive environment for children with disabilities. Through home visits, attending Parent Support Group meetings and community advocacy events, my work helps to tackle the issues related to stigma faced by our target communities. I’ve seen that, because of stigma and lack of education on disabilities, many parents don’t know how to communicate with their children with disabilities. This causes parents to believe that their children will never learn, while others don’t even think they need to learn as they would never be able to use their knowledge.

Over the past seven years, I’ve worked in the community to identify children with disabilities and seen that many parents had extremely poor mindsets towards them. Children with disabilities are marginalised, even by their own families who hide them away for fear of discrimination or violence towards them. This just compounds their isolation and exclusion from society. Ashamed of others seeing that they have a child with a disability, due to unfounded stigma, parents would lock their children inside their houses.

In 2015, we started running Communication Camps, to support parents of children with disabilities in the Musanze, Gakenke and Nyabihu districts. These camps bring together the most marginalised families who have trouble accepting their child’s disability due to deep-rooted traditional attitudes. During, parents of children with disabilities are taught basic skills, such as feeding or physiotherapy exercises, to make children more comfortable. They’re also taught how to run playful activities to stimulate their intellectual development, as well as learning simple techniques to communicate with their child.

Socially distanced Parent Support Groups

To ensure that all children with disabilities are developing to their full potential in their homes we started running Parent Support Groups, networking parents of children with disabilities. Through this channel the parents meet on a monthly basis, to talk about what they learned in the communication camp, share life experiences and successful stories for the betterment of their children. We also helped them to start Savings and Loan associations, to save up money for their families and children.

With these Parents Support Groups, we set out to improve psychosocial wellbeing of children with disabilities by having happy children with happy parents. Our initial goal was to create an enabling environment which develops the full potential of children with disabilities and ensuring that marginalised children have the best start in life. Among 175 children with severe and complex communication disabilities who were followed up using our internal monitoring system, 90% of these children’s well-being status has improved. We also saw the number of times children with disabilities got sick dramatically reduce.

The success of the Parents Support Groups lay within our expertise of working with vulnerable children and young people including children with developmental delays, children with disabilities and children without parents while understanding the general support they need for success. Looking back, I am very proud of my work bringing hope to parents and families who had none. Before joining Chance for Childhood, I worked as a social worker to support child headed households. Now, as a Community Mobiliser, I know how to support vulnerable families.

After Andrew attended a Communication Camp and his family became involved in their local Parent Support Group. Before, he couldn’t walk, and his parents were struggling to care for him. We provided them with a walking frame and are giving the family ongoing support to ensure Andrew gets the childhood he deserves.

From the start, I was wondering how we could make the Parent Support Groups sustainable. In the beginning, we were supporting them financially, but we needed to ensure that could continue long into the future. In 2018, we started giving the families pigs in order to create sustainable change and tackle poverty that most of the families faced. Families who take part in the Parent Support Groups received pigs and so had additional income generated to strengthen the well-being of their children with disabilities and promote social inclusion in community. These pigs are used to fertilise land where families can grow food, giving their child more nutritious food. Using the pig’s manure, their harvest of beans increased by 70%. By breeding the pigs, the families could sell piglets, using the money for clothing and to buy health insurance – meaning their children with disabilities have access to medical services. It is wonderful to see children with disabilities safe and healthy!

I will always encourage parents of children with disabilities to accept their children, be strong and reach out to others in the same situation to support each other. This way, you and your children with disabilities will have the best future.

Jacqueline Mukandayisenga
Community Mobiliser