Kyaninga Child Development Centre (KCDC) was established six years ago to create equal opportunities for children with disabilities in western Uganda. It was founded in response to the lack of available services in the region, as experienced first-hand by co-founder Steve Williams and his wife, Asha, when they were looking for help for their son, Sidney. They eventually decided to look for an international volunteer physiotherapist to help Sidney, who was born with epilepsy and developmental delay, reach some of his developmental milestones.
It was in this way that physiotherapist Fiona Beckerlegge became involved. She read about the volunteer opportunity and agreed to come to Uganda for six months to help Steve and Asha. During that time, Fiona learnt that Steve and Asha had an idea to set up a small centre supporting other families who also struggled to find help for their children with disabilities. Thus Kyaninga Child Development Centre was born. It officially opened in January 2015 with just Fiona and a security guard as staff.
Fiona met Sue Baldock, a trustee of Accomplish Children’s Trust, during a visit back to the UK. KCDC subsequently applied to Accomplish for funding to hire additional staff. In April 2015, Mumbere David, a Ugandan physiotherapist, was employed to work alongside Fiona. Together they developed the community outreach programme, partnering with local community organisations that were supporting children with disabilities, including the Rwenzori Special Needs Foundation (which is now also one of Accomplish’s partners). In August 2015, Ariho Patrick, a Ugandan Occupational Therapist (pictured below), also joined the team, supported by Accomplish.
Six years later, both David and Patrick are integral to the running of the organisation; David leads the team in KCDC’s Kasese clinic and Patrick is team leader for Occupational Therapy. KCDC itself has grown rapidly over the past six years, supporting more than 3500 children with a wide range of physical, intellectual and communication disabilities across seven districts in western Uganda. The team now consists of 18 therapists, four special needs teachers, five business coaches and 11 admin and support staff.
Fathers support group
One of Patrick’s key projects has been creating a fathers support group as part of the community outreach programme. He realised that it is usually mothers or other female caregivers that attend therapy sessions and health education seminars. When they miss an appointment, it is because their male partners are unwilling to support them in attending and don’t give them money for transport or other therapy equipment because they think that a child’s disability is the mother’s fault, a curse on her perhaps. Patrick realised the urgent need for peer support and education for male caregivers to ensure positive changes for their children.
These groups aim to:
Improve fathers’ knowledge about common disabilities
Change attitudes towards their children
Increase involvement in daily care and rehabilitation
To be agents of change for the rights of children with disabilities in their communities
In a discussion about community attitudes towards their children, the fathers shared the following:
‘They say that I waste my time with a child that will not grow’
‘That my child is useless’
‘They restrict their child from playing with mine, as if disability is contagious’
‘Even some relatives do not accept to stay with him when I’m away, that he will burden them’
Peer support and education on common disabilities will empower these male caregivers to explain to community members about disability and advocate for their child’s inclusion in community and educational activities. Patrick says that most fathers who attend are “surprised at how much their child is able to do and how much they can engage with them.”
One of the fathers fed back that the training was “full of sharing and encouragement, which changed my attitude. I can never shout at anyone at home in presence of my son because I learnt that it can affect his mood and behaviour. I ensure that he is always happy.”
Another father said: “I understand my son more than other people at home because I am always playing with him and help him in most activities. He always cries when I am leaving home, yet strangers think that he doesn’t understand well.”
In 2018, David accepted the challenge to set up KCDC’s first satellite clinic in Kasese District. KCDC had been receiving an increasing number of referrals from the district, but it was difficult for families and therapists to follow up regularly because of the distance and cost of travel. David was the only therapist in the clinic for the first few months, with team members travelling from Fort Portal regularly to support him until KCDC was able to recruit additional therapists. He spent a lot of time working with local health centres and community organisations to increase the awareness and understanding of disabilities and to establish outreach programmes in rural communities. He also worked with a physiotherapist from Kagando Hospital and with the Rwenzori Association of Parents of Children with Disabilities (RAPCD), another organisation supported by Accomplish.
These first few months were a challenge. David (who is pictured above) hails from Kasese District, but even so, he was surprised by the level of stigma and misunderstanding around disability. However, once families realised the services that KCDC was offering, they were so grateful to bring their children for assessment and therapy.
There is the ongoing challenge of unmet expectations. Many families also expect KCDC to provide food, housing, school fees, school materials etc., as well as therapy. They are often disappointed and don’t return when they do not receive this additional support. David realised that managing the expectations of health and community workers is vital because the message they give to families has a huge impact on long-term outcomes. He therefore encourages all the therapists in his team to do regular workshops with local health centre workers, community organisations and religious and community leaders. They have also trained five parents to help run the parent education and peer support groups that are so important for acceptance and shared learning.
Our thanks go to Fiona Beckerlegge, Clinical Director at KCDC, for writing this article.