CDS AFRICA ENGAGES CAREGIVERS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

In honour of Global Autism Awareness Month, the Africa Centre for Democracy and Socio-economic Development (CDS Africa) hosted a Focus Group Discussion on May 1, 2024, at Weku Gardens, Adjringanor – Accra. The event engaged caregivers of children with Autism Spectrum Disorder (ASD) to share their experiences, challenges, and needs. With eight participants, the discussion sought to gain valuable insights into the daily realities faced by families raising children with autism, and the importance of creating a supportive environment for both the caregivers and children.

The event also played a significant role in informing CDS Africa’s ongoing research, particularly a project funded by the International Development Research Centre (IDRC). The Focus Group Discussion provided essential firsthand accounts that are valuable for the research on unpaid care work for children with developmental disabilities, offering insights that could help guide and inform the study.

One of the key moments during the discussion was when caregivers shared their struggles in obtaining diagnoses for their children. Reverend Evans Yakuna, a father of a 30-year-old son with autism, shared how he initially identified his son’s condition through a chance article, later confirming it through medical professionals. Mrs. Patrinia Baksmaty, a mother whose daughter was diagnosed with hyperlexia at age two, spoke about her experience as both a mother and a school principal familiar with developmental disabilities. Both participants recounted difficulties with acceptance in their communities, including spiritual misconceptions and fears about revealing diagnoses to extended family and friends.

The financial burden of autism care was another important topic. Mrs. Baksmaty highlighted the high costs of therapy in the U.S., and how insurance coverage played a critical role in making treatments accessible. She also discussed the tough decisions families often make, diverting resources from other children to care for the child with special needs. Similarly, local professionals like Mrs. Ruth Boulo, a therapist, and Mr. Christopher Klove, a consultant at Unique Seed School, discussed the varying costs of therapy and support services based on the severity of the condition and the financial capacity of the family.

The discussion also pointed out the gaps in the education system. Parents spoke about the challenges in advocating for their children’s inclusion in public schools. Mrs. Sonia Yakuna shared her experience of homeschooling her son due to the lack of appropriate educational options in Ghana. Experts like Peter Lambou, a Speech & Special Needs Facilitator, stressed the limited awareness of autism within both the public and private sectors and the absence of government support for children with special needs.

The conversation led to a call for policy changes to improve access to therapies, resources, and inclusive education for children with autism in Ghana. Several participants, including Mrs. Baksmaty, emphasized the need for advocacy and the inclusion of children with special needs in national discussions. Mr. Felix Yao Adjigbli, a speech and language therapist, also advocated for greater investment in training specialists and public education on autism.

In conclusion, the discussions revealed that families face significant challenges, particularly in obtaining diagnoses, securing educational opportunities, and managing the financial burden of care. Participants underscored the importance of improving caregiver and educator training and called for more government involvement and policy reforms to better support children with autism and their families.