By Simon Murithi
According to UNICEF, children with disabilities suffer from marginalisation and exclusion from society in various forms, such as negative attitudes towards them and their families, stigmatisation, and inadequate or a lack of policies and legislation. Together, these factors often translate into a severe infringement of disabled children’s basic human rights, such as a right to healthcare and a right to education. Often, families with disabled children in low and middle income countries are simply left to their own devices, fighting for their survival day-to-day.
The mCHW project, for the past 10 months, has been field testing the use of mobile technology to integrate learning and supervision of Community Health Volunteers in Kibera and Makueni. With a mobile web-based referral application, the CHVs follow up under five children to assess their growth and development. This application is based on the Malawi Development Assessment Tool (MDAT) that was designed for children in sub-Saharan Africa. Using this tool, the CHVs assess child development in four sectors; Gross motor, fine motor, language and speech, and social motor, and refer the children to the nearest health facility and specialist assessment as necessary. Follow up visits and advice to the caregivers are based on the expert-opinion of the CHVs’ supervisors who are either nurses or Public Health Officers.
When CHVs were assesssing child development stage, they were made aware of a group of mothers in the informal settlements of Kibera, who have children with disabilities. They were hearing about these “hidden children” for the first time and, up until now, a considerable number of children with delayed developmental milestones and disability have been detected in the communities. As the project scales up in the coming months, it is an opportunity to increase awareness at community and national level on the importance of growth and development monitoring, the provision of support and care to households with children with any forms of disabilities, and the stimulation of milestones that are delayed.
One of these mothers with a child with disabiltiy is Mama Kale. A mother of two, her eldest girl, aged 3, suffers from Cerebral Palsy (CP); her other child is a baby of three months. Project staff have met with her in her house in Kibera a number of times so far. I recently followed up on these meetings to hear more from her about what life is like day-to-day caring for a child with CP and to find out more about gaps in care that exist that the mCHW project may be able to address.
In our meeting, Mama Kale confirmed the findings of UNICEF, stated above: She said that discrimination and the attribution of disability to ‘evil spirits’ is very high among the community, to the extent that other children are not allowed to play or interact in any way with disabled children. Her friend, she said, whose child suffers similar circumstances, would often visit her to share her experience and to seek advice, and often would get emotional during their conversation.
According to Mama Kale, it was this experience, and the thought of other mothers in Kibera facing similar circumstances in Kibera, that inspired the formation of a social welfare group. The group was formed by the mothers with the objective of providing psychosocial support to each other.
Following on from this, I decided to meet with an expert in disability, and in our conversation he mentioned that disability is, unlike communicable diseases that receive huge funding from the government and development partners, a life-long condition. This means that mothers like Mama Kale spend most of their time providing care to their children, hence compromising economic and social activities.
Being cognisant of this, the Kibera social welfare group, who call themselves First Love Mothers, now has alternating monthly meetings (in members’ homes), where they contribute to a fund for income generating activities and save part of it as insurance for the well-being of their children. Mama Kale acknowledges that it is expensive to provide care (nutritional and medical) to her child and she would not want to pass the financial burden to anyone else in the event that she is not there – a very noble attitude, it seems to me.
Some of the results of this initiative are that mothers:
- Have a forum to discuss their challenges and developmental milestones achieved by their children
- Are comfortable around their children to the extent that they walk around with them
- Have livelihood projects as a result of the fund
- Feel more secure in the event of any child related health emergencies as they can get a soft loan if need be, to take care of the child
Moreover, it is of primary importance for individuals, public, non-public and private sectors to pool together to:
- Strengthen health and education referral systems for disabled children
- Increase access to relevant services such as physiotherapy and speech therapy at community level
- Provide information on disability as a way of changing people’s attitudes and perception as well as equipping care givers with the skills to provide quality holistic care to the child.
- Support community initiatives such as the Mama Kale’s social welfare group in the form of training in financial management and investments, and of providing disability experts to address related challenges.