In the inception of the community based rehabilitation approaches many programmes focused more on the rehabilitation of the children with special needs and persons with disabilities as an alternative rehabilitation health approach away from the institutions and the focus was mainly within the affected families
, The APDK programme however approached the community through a multidisciplinary approach and below is a case study of a child with spina-bifida who has greatly achieved through the multidisciplinary rehabilitation approach.
Name: Blaise Amonde
Age 18 years old
Education – Form Four Salvation Army Joy town Thika secondary.
Condition: spina bifida
Blaise Amonde is the 3rd born in a family of three. The child was born at a private community health facility with spina bifida and the mother was informed by the staff of the clinic that the child had a growth at the back but she did not think it would be life time condition. The family was not sure about the condition of the child and was not sure on what would happen to the child.
Back at home the grandparents felt that the condition was due to unfulfilled cultural beliefs. He was referred to Kenyatta National Hospital at the age of 11 months, the Myocele operation was performed. The parents were referred for physiotherapy at the hospital. When the child was one year the parents were unable to honour all the therapy appointments due to lack of transport money and other costs.
The parents however did not have the same feelings, though they also did not know how to handle the boy and uncertain about the future of the boy.
At birth the reaction of the family was a lot of anxiety and they had not seen such a thing before. Culture myths played a big role. Braise disability has been a difficult thing to the family due to constant care and the purchase of diapers. There was a high family conflict especially when it comes to the family scarce resource expenditure in taking care of Braise.
In the year 2000 during the door-to-identification survey conducted by the APDK Community based rehabilitation program, the boy was identified at the Mariguini village of Mukuru slums when he was 4 years old. The parents were referred to Kijabe hospital for further management of the back opening.
The community rehabilitation worker started visiting the family once a week and training on transfer of therapeutic skills. Both the parents were cooperative and were trained on home based skills therapy. Due to poverty the family was challenged to purchase orthopaedic devices required to support the boy in mobility from one point to the other.
When the boy turned 5 years the parents wanted the boy to attend school but it was difficult to get placement for him due to environmental accessibility and most community schools were not well informed about children with special needs. This challenge faced other parents too, in the programme. Some of the parents of children with special needs were forced by the circumstances to lock their children in their houses. APDK- CBR program continuously empowered the family households as well as facilitating the formation of parents psychosocial support groups. The groups’ goal was to enhance parental acceptance in taking care of the children with special needs. Through the support group, the parents set up a small home school in the village, where they appointed volunteers among themselves.
The parents were subsequently empowered on the needs of the children rights and the support group together with the programme staff started creating awareness to the schools and this saw Braise among other children being admitted in a regular school with a population of over 1000 pupils within the community. The playmates came in handy to carry Braise on theirs back to school and back home every morning and evening and even changing his diapers while at school (the wheelchairs are not accessible in the informal settlement.)
The environmental conditions did not deter Braise from going to school or having his recreational moments. The neighbours supported him after understanding the condition is not infectious. Braise was very active in extra curriculum activities in school. When Braise joined the school for the first day all children were amused when they saw him crawling during field plan as well as using a wheelchair.
With the support of APDK – CBR staff empowering school teachers and support staff, the attitude of the school community drastically changed and started embracing and supporting children with special needs.
Braise was a member of child to child club in the school. The club was involved in using children to pass information of disability and child Rights. The club or child participation club use to perform poems, songs, and drama in the community during important calendar days (Day of African child and U.N day for persons with disabilities).
Currently Braise is in Form two at one of the famous schools Salvation Army Joy Town Thika and does all the activities at school and his academic performance is good, he has been trained on self catheterization and Bowel management. His ambition is to become a Doctor when he grows up.
He is self reliant and good in socialization with his peers. He participates in music festivals and world life club.
Braise is more independent now. He now comes back home from school alone with a matatu.
Braise a computer literate. He uses computer to organise his work both in school and at home.
The role of neighbours has been enormous in support the friends have been of great support to taking him to the primary school before joining secondary school in January 2011 and playing with him, they also help in the personal care of the boy.
The government should have special teachers in all schools and encourage an inclusive education; the parent prefers the community rehabilitation approach because of the parents/guardian involvement in the therapy sessions and involvement in the welfare of her child and the better understanding of disability by other community members.