Resource guide to facilitate linkage of children with developmental disabilities to care
Program Manager: Prince Owusu, Mphil
Project Coordinator: Leonie Akofio-Sowah
Program Director: Dr. Kwame Sakyi
Too many children living with a developmental disability in Ghana do not go to school nor receive adequate and appropriate medical care. These leads to poor health and educational outcomes for the children. For example, research shows that the standard mortality rate of children with cerebral palsy is six times that of the average Ghanaian child, and 15 times that of children living in low-and middle-income countries. Caregivers also experience public and internalized stigma that contributes high divorce rates, economic disempowerment, and mental health challenges.
Our aim at CLCD is to reduce these outcomes by harnessing the expertise of caregivers, tackling stigma face on, connecting caregivers to services, validating diagnostics tools, and providing caregivers, health workers and teachers the training and resources they need to change the trajectories of these children’s lives.
In 2017, the Center for Learning and Childhood-Development-Ghana (CLCD) conducted a formative study to identify gaps in the diagnosis, treatment and care of children living with developmental disabilities (ADHD, cerebral palsy, autism, and learning difficulties) in Ghana. Two key findings of the study were:
Caregivers and health workers often do not know where to find available services, interventions, and resources for children living with a developmental disability (CLWDD).
Health workers have very limited knowledge on developmental disabilities, particularly cerebral palsy. Based on the formative study, the proportion of non-specialist health workers who had adequate knowledge on autism, ADHD, and cerebral palsy was 52%, 40%, and 30% respectively.
Due to these gaps, health workers often do not know where to refer caregivers for support. Given that diagnosis of children with developmental disabilities in Ghana often leads to infanticide, depression, divorce, caregiver burden, stress, economic deprivation and social exclusion, it is critical that caregivers are connected to services that can improve their wellbeing.
CLCD aims to increase knowledge on developmental disabilities and access to related services. We seek to accomplish these goals in two Phases. In Phase 1, which will be completed this summer, our objectives are:
Develop both print and online materials that can facilitate the referral of caregivers of CLWDD to services (here forth referred to as referral materials). This materials includes a brochure, poster, and a searchable database.
Create print materials and lectures to be used for continuous medical education of Ghanaian Health Workers
We have convened an advisory board to guide the development of the resource materials. We also created a questionnaire to start the data collection process. Currently we are in data collection stage.