Taking therapy to the children
Based in the nation’s capital of Freetown, Enable the Children (ETC) was founded in 2007 by British Physiotherapist, Verity Boord who worked in a rehabilitation centre at the time.
“She noticed that children with disabilities were being brought to the centre for a few sessions and then they just stopped coming, explains current ETC Program Director and Physiotherapist, Anna Vines.
“On asking why this was happening, it was explained that children with disabilities are not seen as a priority to the family and so spending money, time and effort on them is seen as a waste.”
Families were also often stigmatised in their communities and ashamed to go out in public with their children. These factors lead to the establishment of ETC as a home-based therapy program to ensure children and their families received the interventions they required.
One of the main ETC goals is to provide occupational therapy and physiotherapy, along with locally sourced assistive devices to children with disabilities. There are only 4 BSc qualified physiotherapists in the whole of Sierra Leone, who work in government facilities alongside nurses and other trained rehabilitation workers.
Of the 900 children ETC currently has registered, approximately 70 per cent have CP.
The program started small. “It was hard to find staff who would be willing to work under the burning sun and the pouring rain, climbing up steep mountains to find the children in their homes,” says Anna.
It is hard to comprehend, but Anna said the other reason it was hard to find staff is a culture where, “Children with CP are seen as devils or witches … A lot of people think the children should be ‘returned to the Devil’ which is a ceremony to kill them.”
Now, a team of therapists, trained by ECT, travel up to 1.5 hours to homes around the area to undertake assessments and provide therapies to improve function across all areas including positioning, mobility, feeding and communication. Two workers are also trained in goal based behavioural therapy, helping children with behavioural problems.
“Children that are patients in the program learn skills they will be able to draw on for the rest of their lives and often experience marked improvements to speech and mobility,” says Anna.
ETC track and monitor improvements in each child’s mobility and function. Therapists also educate parents so they can continue to support their child’s development in the home.
Referrals to the home-based program come via ETC’s 3-weekly clinics, health professionals, the Clubfoot clinic and by word of mouth through the community.
“We see any child who is referred to us as we know that if people are asked to wait, they will likely go to seek traditional medicines, which can make the child worse or even kill them,” says Anna.
More than therapy
With a much wider focus than therapy, ETC aims to empower children with a disability, and give them hope for a better future.
“The long-term goal of the Enable the Children program is to improve the lives of children with disabilities in Freetown, while also facilitating a cultural shift in attitudes toward them,” says Anna.
Lack of social understanding and support can lead to children with disabilities in Sierra Leone being abused, neglected or even rejected by their families.
As well as their home-based program and clinics, ETC also provides more holistic support to families to create a safer, more nurturing home life for the children it serves. This includes:
- business start-up grants to enable families to change their method of income so they can work from home and better support their child with CP
- financial assistance for children to access school
- trained mediators to work with families to help stop family breakdown
- stakeholder education regarding the needs of families of children with disabilities
- community education regarding medical causes of disabilities to help them understand it is not due to demonic forces or a curse. This includes the production of a music video about how children with disabilities should be loved and respected. This video will be played on local TV and is available on YouTube – Not a Devil, Not a Witch.
- family support groups, held monthly to enable them to share their experiences raising a child with CP, receive education and discuss community needs
- hosting an annual beach gathering where ETC families can socialise and share their experiences.
These programs and interventions are a lifeline to many families, as evidenced by this comment from the mother of a 4-year-old with CP:
“‘Harriet is doing much better now thanks to God, the exercises and the splint that they gave me. Her feet now rest on the ground most of the time when she is standing. The beach outing was very enjoyable, especially the testimonies that gave me courage to love Harriet more.”
Through education and facilitating a supportive environment for children with CP, ETC is changing the response from rejection to acceptance in their families and in their communities.