Wheelchairs for people with Cerebral Palsy and Training for Carers and Communities in Northern Uganda
Annually, Bishops’ Appeal gives between 10k and 15k to Motivation to support various aspects of their work with people with special needs. They provide wheelchairs, training for carers, schools and for people living with cerebral palsy and destigmatising workshops for the wider communities. Here is an example of how recent funding was utilised.
Uganda has high levels of disability due to the impact of poverty, the result of the conflict in the north of the country and lack of access to healthcare. In Northern Uganda which has previously been the main area of focus for Motivation’s work, it is estimated that 72% of people with a disability are living in a state of chronic poverty. The Government of Uganda has ratified the UN Convention on the Rights of Persons with Disabilities but there is a huge lack of appropriate care, rehabilitation and mobility products for children and adults.
Life for disabled children in Uganda is particularly challenging. Often abandoned, they face constant marginalisation and stigmatisation. Negative attitudes regarding disability prevail with disabled children sometimes being regarded as a curse and denied education and healthcare. On average, one in 300 children is born with cerebral palsy. UNESCO estimates that only 2% of disabled children attend school.
Motivation is working with four service partners in the Gulu, Amuru, Kasese and Kampala districts of Uganda. We have already distributed 100 wheelchairs to date, mainly through training, and we aim to provide and fit appropriate supportive seating to approximately 400 children this year. We are engaging mothers and carers of children with cerebral palsy, training them how to position, feed and play with their children to increase their chances of survival and improve quality of life. We are also working with schools to make them more inclusive for children with disabilities, and helping parent groups to work together on income generation activities when their children are safely seated.
World Health Organization (WHO) training in wheelchair services
Our partners have already participated in WHO management training and WHO Basic Training in wheelchair services. In October our partners attended intermediate training to fit chairs to beneficiaries with more complex postural needs, who cannot sit upright on their own. This involves a comprehensive assessment of postural needs and cutting cushions and adjusting the supportive seating to ensure the child is correctly supported.
During this final tranche of training 12 children were provided with appropriate wheelchairs. The project’s wheelchair shipment of 360 chairs is on its way to the partners now. All this training will be used this year in prescribing and fitting chairs to children who need them. Our aim is to fit at least 400 wheelchairs to children with cerebral palsy in 2014.
Parents and carers training
Through this training, mothers learn why their children are disabled and how to care for them so that they can reach their potential. Mothers report fewer episodes of life-threatening pneumonia, diarrhoea and malaria in their children since the training.
The training is currently divided into seven modules: Introduction to cerebral palsy; Evaluating your child; Positioning; Feeding; Play; Communication; and Everyday activities. ‘Introduction to cerebral palsy’ clearly explains the risk factors that can result in cerebral palsy before, during and after the birth. It also discusses how every child has the right to go to school.
Through this programme 83 parents/carers and their children have benefitted from this group training to date.
In addition to group work, home visits were made by parent facilitators. The common issues they discussed were, feeding, continence, communication, positioning, mobility and education. The result of these home visits was that parents now feel they can take their children to school. One parent said she is happy now she can leave her child to play with others at home due to the support the facilitator gave in seating and positioning of the child during her home visit. We are continuing parent/carer training into 2014 with a target of 96 groups running by the end of March 2015.
Capacity building meetings have been held with Gulu Regional Referral hospital so they are now prepared, in terms of their technical and clinical capacity, to start services now the wheelchairs have arrived in Gulu.
Equipment and tools were also delivered to our partners to set up wheelchair services.
Four inclusion training sessions have also been held with the lower government leaders in the sub-counties/divisions in the Gulu and Amuru districts. These sub-counties/divisions are the project areas covered by the parent/carer groups. The training was to inform local authorities in the project areas about the project and generate more support at local level to the groups. As a result many children with cerebral palsy are being identified by the local authority.
There has also been capacity building training on group management, record keeping, organizing effective meetings and leadership for some of the parent groups. This will help the groups to become more coherent and work more effectively and efficiently.
In December one group in Layibi (22 participants) attended business skills and management training, which was very comprehensive and covered all the skills and knowledge required to successfully manage a small business, including business plan development, financial record keeping, marketing, and sources of capital funding. The facilitator was chosen because of his business skill as well as a means of getting more resources from the local government to support the group. We will be working with other groups to train parents/carers in business management skills, identify income generating activities and link them to finance institutions and other stakeholders in 2014. The aim is to have 10 groups registered and working with microfinance institutions by March 2015.
Ojok has been fitted with a Moti-Go supportive wheelchair, which he and his family love. He goes to church and to the health centre in it. His mother says she is very happy as it is so easy to take him around. At home the other children love to push him around, and he is pushing himself a little, which everyone is very excited about. Mum is now going to try and get him admitted to a school.
We aim to increase the number of children with disabilities attending school by working with schools and teacher training colleges, to improve attitudes towards the inclusion of disabled children and carrying out structural changes to increase accessibility
Working with schools
We are working at group level to raise awareness with parents and local communities on the rights of disabled children to go to school. We are also raising awareness with schools and local authorities to encourage children with disabilities to attend, especially children with cerebral palsy.
We are training school staff on issues like helping with continence. Our aim is to work with the schools to make them inclusive in every sense.
The school year is approximately from February to November, so we have been identifying some local schools for structural modifications. They should be building ramps and completing other structural work at the moment – during the school holidays.
Much of our work in the beginning of 2014 will be focussed on access to education for children with mobility disabilities in our project areas in Uganda. Our aim is that at least six schools will have improved disabled access by 2015
Three year old Junior has been fitted with a Moti-start supportive seat. Living where she does, in a rural village, his mother had no expectations of any assistance with her child and thought she was on her own. Junior is unable to sit unsupported and used to spend all his time lying down. Now he can sit outside and watch the other children playing. She even carries the seat to church so he can sit in it. Now his mother takes him into her garden in his chair so that he can watch her working.
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