CONTRIBUTORS
Fridah Gatwiri Kiambati
Post-Doctoral Research Scientist
By Fridah G. Kiambati
The prevalence rate of children with disabilities and special needs in education in Kenya is approximately 11.4% (KISE, 2018). This covers children with impairments including visual, hearing, autism spectrum disorder, and intellectual and physical disabilities, amongst others. There are, among this population, some individuals who suffer from multiple disabilities. In addition, the severity of the disabilities ranges from mild to severe (MoE, 2018).
Parents and caregivers of children with disabilities devote their lives to caring for these children. In most cases, these parents get too overwhelmed by the needs of these children and tend to forget their wellbeing. Regardless of their economic status, most are kept too busy to even participate in income-generating activities that would improve their lives and that of their families. So, who takes care of parents and caregivers of children with disabilities?
In a conference held at the Kenya Institute of Special Education (KISE) on “Parental Empowerment and Engagement in Nurturing the Potential of Children with Disabilities’’ held in November 2022, and an earlier “National Rehabilitation Conference” held in December 2021, parents shared their experiences, reflecting on the challenges regarding raising and caring for a child with a disability. Their reflections are well articulated in one parent’s statement: “I stopped living my own life 17 years ago when my child with a disability was born.’’ This statement illuminates the magnitude of the matter while highlighting the need for action that would lighten the burden of care for these caregivers.
Reflections from the Parents
Employment
Many parents recalled that they stopped working to take care of their children with disabilities. This caused financial challenges and more strain on available family resources due to the many hospital visits and therapy sessions.
Separation
Some parents said that their partners left when the child with a disability was born, leaving them alone with the burden of raising the child with disability alongside other children amidst a myriad of competing family responsibilities. In some communities, giving birth to a child with a disability is considered a bad omen, explaining why some parents abandon children with disabilities.
Economic burden
Caring for a child with severe disability and those with specific types of disabilities such as autism spectrum disorder, intellectual disability, deaf-blindness, and cerebral palsy is a full-time responsibility. This compromises one’s prioritization of self-care and economic pursuits. In most cases, the same parent who gives care to a child with a disability is also required to feed and educate other children. Moreover, most parents can hardly afford a qualified caregiver to support the needs of children with disabilities. This scenario confirms findings from an earlier study that most families of children with disabilities live in poverty (KISE, 2021).
Exhaustion and care fatigue
For parents of a child with a severe disability, life changes to a full-time endeavor to nurture their bundle of blessings. Without a robust support system, this journey becomes stressful and exhaustive. In addition, the parents or caregivers may suffer from stress disorders due to the degree of care and full-time alertness required of them. The quality of care to the child may be compromised because, in some cases, the caregiver becomes apathetic and indifferent.
Call to action: Recognize, Reduce, Reward, Redistribute Care for Children Living with Disability
As the shoe-wearer’s analogy suggests, it is the shoe-wearer who knows when the shoe hurts and where it hurts most! There are no better solutions than those the shoe-wearer proposes. Therefore, here are the key suggestions the parents of children with disabilities shared during the parents’ conference held at KISE in November 2022. Their reflections call for urgent interventions targeting the wellbeing of the parent of a child with a disability.
Parent support programs
The parents proposed a structured intervention to support their overall wellbeing. This may include targeted parental empowerment and engagement programs, such as parent support programs that care for their social, emotional, mental, and financial wellbeing. This intervention, as the parents argued, would lower the cases of depression as well as the abandonment of children born with disabilities.
Daycare centers
Several daycare centers exist, especially in the cities and major towns nationwide. However, very few children with disabilities are admitted to these centers. Children with disabilities require trained personnel who understand and can meet their needs. Establishing daycare centers for such children would be invaluable in relieving the parents, who can then take up employment opportunities and other societal roles.
Parents’ networks
Parents from the ‘Through the Roof’ parents’ network (TTR) in Kenya who attended the parent’s conference shared the role the TTR parents’ network plays in bringing them together and providing a platform to share their struggles and joys in raising their children with disabilities. Parent-to-parent support has benefited many parents who belong to TTR, as well articulated by one parent asserting: “I stumbled onto a group and shared my story. Thereafter, I met two other parents who took me through and gave me awareness, and their experiences calmed me down”. This justifies the imperative call to strengthen such existing networks to increase their impact on the lives of parents and caregivers of children with disabilities.
Parental empowerment
Supporting the parent in understanding the type of disability and the required intervention for the child is a step toward parental support and peace of mind. As the parents explained, this would involve empowering the parent on the importance of early functional assessment, diagnosis, and timely intervention. This is corroborated by the voice of one of the parents: “From my end, I didn’t know there was anything wrong with my child. Later in life, when he turned five years old, an educational psychologist made me understand what my child was going through. Eventually, we got a lengthy diagnosis that brought understanding, and it was easier to reach out to other parents with autistic children”. Parents and caregivers, therefore, require empowerment and capacity strengthening on home-based care and support.
Conclusion
Parents and caregivers of children with disabilities essentially experience stress, exhaustion, fatigue as well as financial strain in the journey of caring for their children with disabilities. Therefore, they require continuous support, reassurance, empowerment, and targeted care and support to thrive and live their lives.