Support and Empowerment for Parents and Caregivers
Every family affected by disability has the right and potential to participate actively in the life and activities of their community. Many people in the community can help to connect these families to existing resources of support and services available in the community.
Findings from disability surveys within the community have shown us more about the impact of disability on families, the multiple barriers preventing participation and the inputs and skills requested by families to support them. We know from a recent survey that just over 10% of young people with disabilities hardly ever leave or socialise beyond their home. 30% of school going age do not attend school, or a centre of learning or care during the day, depriving them of opportunities to develop their strengths and abilities.
Carers can be empowered through learning basic skills of care, physical handling, behaviour management and how to stimulate development. This may benefit the child and reduce the toll on the carer’s physical and mental well-being. The wider community when equipped with new awareness about disability can learn how to come alongside families affected by disability and to challenge myths and stigmas existing in the community. We need to support carers like this mother who claims “the family is unhappy because she (their child with a disability) does not make sense when she talks, she does not understand anything and does things wrong” or the carer who says “I was frightened, I sweat when I have to work with him (the child with a disability)”
Many carers say they have never felt listened to before or had anyone talk through their child’s disability with them. When supported by the community, a parent has renewed hope and confidence for their child and family’s future.
One carer shared this with our team during training: “I was always having a problem feeding this poor soul and would end up crying myself as I couldn’t put food in his mouth…it is true when you said caring job was made so much easier when you understand the disability or your child and the things you need to do”
Families with children with disabilities are encouraged to share their journeys in support of each other, and lobby together for the well-being of their children.