This project was a World Cerebral Palsy Day Award winner in 2017. Enter your project or campaign in the 2018 Awards!
Motivation – a mobility-focused organisation – worked with its extensive network of partners in Uganda to address a formidable issue: the lack of services and supports for families of children with cerebral palsy and other disabilities.
The primary goals of this project funded with aid from the UK government were to:
- support parents to better care for their children with cerebral palsy
- improve access to wheelchairs
- increase educational inclusion for children with disabilities, and provide support and education to carers.
While children with disabilities such as cerebral palsy were at the very heart of this project, it was also families, health professionals and the wider community that benefited.
Training and education were the foundations used to build a strong platform for equipping families and communities to help children with disabilities with reaching their full potential.
As well as the establishment of Parent Support Groups, education was delivered to parents about:
- the causes of cerebral palsy
- children’s rights
- daily support and care activities such as feeding, communicating and positioning.
Community-based staff were trained in wheelchair referral practices, and staff at 4 local wheelchair services were also educated on the World Health Organization Guidelines for assessing and prescribing wheelchairs. Helpfully, they also received technical training on modifications and repairs.
To foster a more inclusive approach to disabled children accessing education, inclusion training was delivered to:
- local leaders
- parent-teacher associations, and
- local government.
Access issues in a number of schools were addressed with seemingly simple structural modifications that many Western countries often take for granted, such as:
- widening doorways
- building ramps, and
- adding wheelchair accessible toilets.
The project’s success was heavily reliant on an extensive network of partnerships with local organisations and groups, including:
- Comprehensive Rehabilitation Service in Uganda
- Kagando Mission Hospital
- Mulago National Referral Hospital
- The National Wheelchair Coordination Committee
- Gulu Disabled Persons Union
- Gulu Regional Referral Hospital
- St Jude’s Children’s Home
- Rwenzori Association of Parents of Children with Disabilities
- Ugandan Society for Disabled Children.
Community networks, and the networks of partners, were constantly leveraged to ensure children were referred to wheelchair services and provided with the appropriate devices to keep them healthy and increase their independence.
Parent Support Groups were linked up with organisations that provided training and knowledge to start village saving schemes and income-generating activities. These activities included pig rearing, soap making, mushroom growing, and laundry services.
Training was delivered to 1,632 parents and carers of disabled children over the course of the project. The feedback from these sessions was overwhelmingly positive with 88 per cent of attendees saying they felt more confident caring for their disabled child and 86 per cent reporting improvement in their own well-being.
“I used to isolate myself and cry every day and didn’t want anyone to know about my child. Now I am very strong.” – Parent, Entebbe
The wheelchair services established through the project resulted in 819 children being fitted with appropriate wheelchairs or supportive seating. This greatly reduces the challenges and barriers faced by children and their families, with 85 per cent of recipients reporting an improvement in their child’s health.
“A lot has been achieved as a result of getting the wheelchair. My child is able to sit independently, has hand function with playing toys, tries to feed herself and can stand with support.” – Parent, Kampala.
Training in income-generation support was delivered to 542 parents of disabled children. The majority (83 per cent) went on to develop income-generating activities or participate in group savings schemes to help cover the costs of caring for their children.
Inclusive education was delivered to 777 education stakeholders.
Ten schools underwent structural modifications to make them more accessible to children using wheelchairs, resulting in an increase in enrollment of disabled children. Parents also reported changed attitudes towards their children from school staff and community members.
“My child is very bright. The teacher is really proud of him that he is the best in class despite his disability.’ – Mother, Kampala
Where to from here?
Motivation’s Astrid Jenkinson says there is a lot more work to do. “Motivation has been in discussions with a number of organisations about extending this program into the east of Uganda where we know that there is a significant need,” she says.
“However, this is dependent on funding. The learning from this project has also informed how we have delivered Parent Carer Training in Malawi, Tanzania and Sri Lanka.”
In the meantime, with continued UK aid funding from the UK government, the project in Kasese and Kampala forges on with plans to implement a Children’s Peer Training Package soon.
“This training program – which is delivered by existing wheelchair users for children new to using wheelchairs – allows disabled children to practice wheelchair skills and learn about key health care topics, including pressure sore prevention, and disability rights issues.”
“It also gives them an opportunity to meet other disabled children and adults and see that they can have hope for the future,” explains Astrid.
“Following the delivery of this course in Malawi, children who had initially reported having no hope for the future stated that they wanted to go to school and wanted to be doctors when they grew up.”