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 in South Africa, 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 socialize beyond their home. 30% of school going age do not attend school, or a center 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, behavior 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.
While our focus is on supporting children with mobility disabilities, the reality in South Africa remains that many children with mobility disabilities have other needs. The centers and communities where we work also support children with a range of challenges.
- Direct Support: Our Social Work team works directly with individuals and families to provide support accessing grants, placement in school, manage violence and access the range of services and support needed.
- Surveys: We have conducted to date over 21,000 door to door surveys in South Africa identifying barriers to access and children in need of support.
- Parent Champions: Our Parent Champions provide a point of expertise and knowledge within the community forming a link between families and the range of support organisations.
- Parent Support Groups: Support groups provide peer to peer practical support within communities while at the same time allowing families respite and psychological support.
Ndinogona "I Can" Program
Sadly most day care and Early Childhood Development centers are staffed by caregivers untrained to support children with disabilities.
The award winning Ndinogona “I Can” Program provides training, mentoring and tools for caregivers. The program was designed by Occupational Therapists to give caregivers the tools to empower children across a range of disabilities.
The program focuses on empowering caregivers with the knowledge and experience in providing structured stimulation and ECD activities for all children, and how to adjust activities to accommodate each child's specific needs. This includes an understanding of disability rights, individual learning plans and the importance of inclusive education for all.
Caregivers are also provided with a comprehensive manual of activities adjustable across a range of individual needs. The program is supplemented by a kit containing over 100 different activities and caregivers are taught to make many more out of recycled material. The kit also includes tools to support engaging with non-verbal children as well as simple, replicable items to assist children with other specific needs.
Parents receive training in order to bring the learning into the household and to build their visions for their children, empowering them to support their children’s journey to education and beyond.
An estimated 597,953 South African children with disabilities are currently excluded from education. (Department of Basic Education 2015:21) This is a generation of children who will grow up without basic educational skills; the ability to gain employment or care for themselves.
It is vital that children with disabilities and their families are given the tools to participate in education as early as possible. Without this support, children with disabilities fall even further behind their peers and face even greater odds of being rejected by mainstream schools. On average only 43.7% of children in South Africa with disabilities are in ECD and Day Care Centers.
Uhambo USA financially supports programs to build the capacity of ECD and Day Care Centers to support children with disabilities. This is supplemented by training for parents.
All children have the right to play, and yet for many children with disabilities this is not considered. Structured stimulation builds on the concepts that children learn through play. Uhambo USA supports the award winning Ndinogona “I Can” Program based on the principles of structured stimulation.