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Children with disabilities are one of the most marginalised groups in society worldwide. In Uganda, approximately 12% of children are living with a disability, but there are many cultural and social stigmas that make this marginalisation even greater. Widespread beliefs that disabilities are an untreatable curse, disabled children and their families are excluded from educational institutions and their communities in general. This poor understanding of disability is a barrier to progress, learning and independence for many children and their families. Further, even when families seek treatment, there are very few therapists in Uganda, and they are usually found in the larger cities and hospitals, where many families cannot access them.
Kyaninga Child Development Centre (KCDC) improves the lives of children with disabilities and their families, allowing them to play a more meaningful role in society. Their specialist rehabilitation for children includes physiotherapy, occupational and speech therapy, which allows children that were previously unable to do simple tasks such as sit or walk independently do much more. The majority of treatment is currently provided at an outpatient clinic, however, for those that cannot travel due to their disability, limited mobility or economic situation, KCDC also runs a community outreach programme where they see clients in their homes. They also encourage integration into the community by promoting access to education and vocational training and providing support and training to caregivers, teachers and other community based organisation workers.
KCDC is the only centre offering specialist therapy services for disabled children in western Uganda, as well as the only centre providing community-based rehabilitation services. Other NGO's in Western Uganda who work with children do not provide direct therapeutic services that directly reduce the effect of disabilities but rather circumstantial aspects of a child's life who is affected by disabilities. As many of these families KCDC supports are subsistence living and do not have an income to support the high costs of caring for a child with a disability, they do not currently charge for their services, but are developing training programs on income-generating activities specifically for families with disabilities so they are able to generate revenue in the future. KCDC has already worked with over 250 children, and is met with increasing demand for their services almost daily.
KCDC was started in response to the lack of rehabilitation services available for Steve’s own son. As Executive Director, Steve is integral in setting KCDC’s strategy, managing its budget and controlling its finances. Prior to starting KCDC, Steve developed and built Kyaninga Lodge, one of the highest-quality Ugandan hotels, into an extremely successful business. His long-term experience of living and working in Uganda, and running a successful business make him an essential part of the KCDC management team. His personal knowledge of having a child with a disability also places him in the unique position to be able to have a clear vision of the services required and the passion to deliver them.
Fiona is in charge of the day-to-day running of KCDC, including training and managing staff, and directly providing physiotherapy assessment and treatment to clients. She also is the point of contact for partner organisations, and networks with related companies. Fiona is a highly skilled British paediatric physiotherapist with over 15 years of experience working with clients of all ages in acute hospital and community settings. During her many years of clinical practice Fiona has become an expert in treating children with physical disabilities, and has taught many students and junior staff in a wide range of clinical settings.
Asha is one of the founding members of KCDC and is Steve’s wife. After their son was diagnosed with epilepsy and developmental delay it quickly became apparent that suitable care provision was lacking in Uganda. In order to prevent other parents having to face the same difficulties as they had, Asha and Steve envisioned a centre that would offer specialist support for all manner of disabilities while also providing community outreach programs for those who were unable to reach the centre, and it is out of this that KCDC was founded. Through her first degree in administration with focus on human rights she discovered she had found her passion and is currently completing her second degree in social and community development which she hopes will enable her to bolster the package already on offer at KCDC
Steve is highly motivated and ideas driven, and has built Kyaninga Lodge into an extremely successful business. His experience of living and working in Uganda, and running a successful business make him an essential part of the KCDC management team. His personal knowledge of having a child with a disability also places him in the unique position to be able to have a clear vision of the services required and the passion to deliver this Fiona is a highly skilled British paediatric physiotherapist with over 15 years of experience working with clients of all ages in acute hospital and community settings. She has always been interested in working with children with disabilities, starting at the age of 14 when she began volunteering with the local Riding for the Disabled group and at the local special needs school. This has also developed into providing therapeutic riding lessons to children while I worked in Bermuda. During her many years of clinical practice Fiona has become an expert in treating children with physical disabilities, and has taught many students and junior staff in a wide range of clinical settings. Fiona has seen first hand the desperate struggle many families with children with disabilities in Uganda face and has a passion to alleviate some of this suffering through community education, rehabilitation and training of Ugandan therapists
Kyaninga Child Development Centre continues to offer physiotherapy, occupational and speech therapy to children with disabilities in their clinic and through community outreach activities to rural villages in Western Uganda. KCDC staff average visits to 30 children per week through their community outreach activities, where therapy assessment and treatment is conducted in private homes, local health centres, under trees in villages, churches and schools. They are also averaging 10 new clients a month through these activities.
KCDC has had the benefit of a volunteer British speech therapist, Jo, for the past 4 months, who has been training all our staff in speech and language assessment and treatment, and has provided comprehensive speech, language and feeding assessments to over 60 children. Many of these children are unable to speak and have been unable to communicate with their families and in turn have been excluded from community and social activities and attending school because of this lack of communication. By introducing a variety of simple alternative communication methods, including sign language and picture communication, 73% of these children have reached or partially reached their set objectives and families and communities are becoming much more inclusive.
In addition to this Jo was also able to attend a two day training workshop with specialist feeding therapists in Kampala. They were visiting from the UK, teaching basic feeding techniques to mothers in a cerebral palsy education group. Through the training they were teaching the mothers how to correctly position their child, use utensils (different spoons/cups), and prepare food at different textures and basic nutritional advice.
After completing this workshop Jo returned to KCDC and along with KCDC’s senior Occupational Therapist, Rachel, they set about assessing and advising parents that were identified to have children with feeding difficulties and malnutrition.
They devised a simple assessment questionnaire and gathered some example cups and spoons. They have only been assessing children in the past few weeks but have already seen and followed up over 15 children and more are booked in for assessments in future outreach programmes. It’s exciting to see immediate changes being in made in the way a mum/carer is feeding their child, which is having a direct impact on the safety of their feeding and in the success of moving a child on to the next stage of feeding development e.g. moving onto solid food, chewing or biting skills which previously were not there.
Many of our children with feeding and swallowing difficulties are also severely malnourished so we also provide basic nutritional advice around what foods are good for building strength and weight as well as providing alternative ways to introduce liquids safely using locally sourced items such as avocado, porridge, mashed papaya and banana.
Both Jo and Rachel are excited about, and have enjoyed developing, this additional element to the services provided by KCDC and have been really encouraged to see dramatic changes in such a short amount of time. This also shows that a little bit of training can go a long way in improving a child’s ability to develop essential skills to improve their daily living.
A short testimonial from one of these mothers explains how a little change can go such a long way:
Daniel is two years old and lives with his grandmother, as his mother abandoned him when he was 6 months old. He has severe cerebral palsy and is unable to sit without support. He has been attending KCDC for over 6 months for physiotherapy to improve his head control, trunk strength and hand function, but his grandmother has always complained about how he chokes on his food when she tries to give him anything solid, and he survives on a diet of milk and porridge. This has made him extremely malnourished.
Daniel was seen by Rachel and Jo, under a tree during one of the regular community outreach programmes, where they assessed their feeding technique. They found that his positioning was poor, tilted too far back, she was rushing to put the next mouthful in before checking he had managed to swallow and clear the food, and each mouthful was too big for him to manage.
By changing him into a more upright supported position, using a small spoon to control quantity, and checking his mouth before adding more food, she realized that he can take mashed solid foods without coughing and choking, and that the total time to feed him was reduced. When reviewed 2 weeks later, Daniel’s grandmother reported that he had more interest in food, was coughing much less at every meal and she is already able to increase the range of foods she can give him. She was amazed that he was able to eat such a variety and is now hopeful he can put on weight and be more successful with his physiotherapy progress.
Funding for this Company has ended