For this article, the researcher presents the results using an approach that focuses on the conscious experience of parents of children with a developmental disability, as the source of knowledge in relation to the changing situations and interconnectedness with their ability to socially integrate. The emphasis is on presenting the excerpts from the interviews and focus group discussions in contexts that facilitate the reader’s emphatic understanding of the subject. Interpretations are advanced when the material seems strong enough to warrant them.
5.1. Moral Model of Disability and Its Influence on Primary and Secondary Caregivers in Kenya
Social and Cultural aspects of community life have often shaped the way persons with disabilities are treated by others [29
]. In Kenya, children and adults with DDs were often shunned by the community due to cultural beliefs [30
]. In Kiswahili language the country’s second national language, a person who has a mental illness that cannot be diagnosed through medical assessments is known as “mwenda wazimu
” or mad person. For the longest time, there were only two public healthcare facilities that would address mental healthcare [31
], these are; Mathari Hospital in Nairobi and Port Reitz hospital in Mombasa. Perceptions about the causes of DDs may be attributed to witchcraft, depending on one’s ethnic background [32
]. This prejudice is also noted for other African countries such as Tanzania [33
], Malawi [34
] and Namibia [35
]. Prejudice results in stigma around persons with DDs and their caregivers.
In this study, caregivers are categorized as follows; primary caregivers (parents and close relatives such as aunts, grandparents) and secondary caregivers as the educational and rehabilitation practitioners of the children with DDs. Studies have shown that the primary caregivers of children with DDs in African countries such as Tanzania [36
] may become immobilized by the around the clock care that they have to provide to their children [34
]. This may negatively affect their own health [24
]. During the focus group discussions parents revealed that “the role of caregivers is increased according to the capabilities of the child. Children with severe developmental disabilities are often not brought for assessment because the parents have lost hope and some prefer to just hide the child in the house”
FGD, KISE low SES.
Another challenge lies in the absence of enough trained rehabilitation specialists. The research noted that there is only one speech therapist at KISE (a Catholic nun). She sees on average 10 children a day. Parents of children with autism come to KISE mainly to have access to the free speech therapy. In a focus group discussion, some parents explained that “It is good to meet a therapist like the catholic nun because she is a devout Christian and during the session, we feel that she is also praying for healing for the child, even though she is not verbalizing it. This is very reassuring” FGD, KISE, low SES.
Notably, the interaction of the catholic nun with the parents also shows the strength of the existence of the moral model of disability because parents feel that her religious background is beneficial to their childrens’ wellbeing.
The study observed that, the parents of children with autism, bring them for assessment to KISE at an average of 4–5 years of age. At KISE, the free speech therapy is only offered up to 6 years of age. However, because other DDs such as Down syndrome, are recognizable through physical features, parents of such children came for assessment earlier averaging between 2 years to 4 years. The choice to bring the child to KISE for assessments has not been made compulsory by the government and therefore remains the prerogative of the parent. In other discussions, parents revealed that “At least when the child is capable of walking, or mumbling some words, we feel encouraged to bring the child here for assessment”. FGD low SES, KISE, October 2018.
According to another group of parents “Majority of those parents with Down syndrome who came to KISE wanted a placement for the child due to bullying at a pre-primary school. Whilst those with children who have autism wanted a warning letter for teachers who were frequently beating their children due to the perceived ‘rudeness’ of the child” FGD low SES, KISE October 2018.
According to the FGD with parents from low SES, a child who cannot walk to school may automatically place him or her in the category of severe even though his/her cognitive abilities may be assessed as moderate. The respondents from low SES attribute this to the challenges faced by using public transport. The public buses and “matatus” (minivans for 12 passengers), do not have a ramp system to accommodate wheelchairs. In addition, respondents (mostly mothers) stated that they have to carry their children on the back to take them for rehabilitation or healthcare services or when visiting family members in other parts of the country. In addition, most schools do not have ramps for accessing classrooms or toilets. Therefore, those children with a DD who also use mobility aids such as wheelchairs are considered to be needier.
In addition, there are the cultural beliefs about the “cause” or source of the child’s disability that have serious implications on either the mother or father. These beliefs are not homogenous and are dependent on the parents’ ethnic community. For example, Gona et al. (2017) states that amongst the Giriama in Kenya, the mother is presumed to have been adulterous hence the presence of a developmental disability in the child. Whilst in some cases the blame is placed on the father. It is said that he had been adulterous and ‘touched’ the child after his transgression [32
]. The disability that is believed to have been caused by a “witchcraft spell” from relatives or jealous neighbors is seen as bad luck, however it allows the parents to be absolved of blame. Overall, during this study, FGDs with parents established that when a child’s disability is believed to have been caused by external factors, such as the will of God or a jealous neighbor or relatives, it is measured as a lesser problem than that caused by beliefs accusing either the mother of father of being “adulterous” and therefore has lesser affiliate stigma [25
], to the primary caregivers.
5.2. Background on Public Educational Institutions for Developmental Disabilities in Kenya
The need to review the Kenyan educational system has been viewed as integral to national development since the post-colonial government of 1963 [37
]. In 2003, the Government of Kenya, following a 2002 election campaign pledge, introduced the Free Primary Education (FPE) policy in order to universalize access to primary education and increase educational attainment in the country [38
]. This means that teachers in primary schools are overwhelmed by the enrollment numbers of ‘typical’ children and therefore are easily discriminatory towards those with a developmental disability. Even though the model of inclusive education is part of the sustainable development goals, in Kenya, there still exist schools which only cater for children with DDs. Some parents believe that this system protects their children from sexual abuses which has been noted in other African countries such as Botswana [39
] and Malawi [40
For insights on primary and secondary education, the researcher visited two government primary schools namely; St. Patrick’s school for the mentally handicapped in Thika town and the model inclusive pre-primary school. The latter is a perfect case study on how inclusion works, and is situated within the Kenya Institute of Special Education. The researcher also visited a privately run school called Mirema which has a special needs unit. Mirema was targeted because a mother whose son has autism, started a collaborative project on inclusive employment through a leading pharmaceutical company from the United Kingdom. For a look at tertiary education, the researcher visited Maria Magdalena sheltered workshops for persons with disabilities in Thika. This will be discussed in detail below.
5.2.1. Kenya Institute of Special Education (KISE)
The Kenya Institute of special education was established on 14th
February 1986 to train teachers and other personnel who offer services to learners with special needs and disabilities. According to Chege (2016), children with disabilities who are from poor backgrounds in Kenya are less likely to have access to education [41
]. Therefore KISE runs several educational assessment centers countrywide as well as a model inclusive pre-primary school in Nairobi, targeting Kenyans from all social economic backgrounds. In 2017/2018, there were 1577 children with special needs who were assessed. In addition, 2150 children with cerebral palsy were offered rehabilitation services at the institute’s assessment centres. As of 12 October 2018, there were 29,406 special needs education teachers and instructors who have graduated from the institution since 1986.
5.2.2. Saint Patrick’s School for the Mentally Handicapped
The Saint Patrick’s School for the mentally handicapped in Thika is a government institution that receives support from the Lion’s club of Kilimambogo, a charitable organization. The school has a population of 67 boarders and 50 day-scholars between 5 and 25 years. The class hours run from 8.00 a.m. to 3.00 p.m. in the afternoon.
According to the head teacher; “The school teaching staff is well equipped for children with developmental disabilities. What is lacking is funding to construct more classes because of the demand for enrollment from parents. The neighbouring special needs school –Joytown, which I used to be head teacher, has a capacity of 340 boarders. So I know that it is possible to manage that number. We have a waiting list of 250 children and this is very frustrating to parents. In addition, there are many special needs teachers now in Kenya and the teachers service commission pays them an additional 10,000 Kenya shillings on their fixed salary. This is a good incentive as compared to other teachers teaching in ‘typical’ schools. The will to teach children with DDs is there however, we need to get psychiatric staff, a resident nurse or even a clinic because these children are often sick. Can you imagine when a boarder is sick, we still have to rush him/her to a government hospital at night. There is no cost for treatment but we have to finance transportation, have an accompanying person in case of violent spasms from the sick child. Sometimes when the child does not have a NCPWD card, we queue like others with ‘normal children’ and this is frustrating for both the caregivers and the child with a disability” KII, Head teacher.
The study established that, many parents opt to enroll their children in boarding facilities because they cannot drop-off their children at 8.00 am every morning and then report on time for work. Similarly, the pick-up time for children is at 3.00 pm and does not align to normal working hours. It is within this context, that the school offers boarding facilities. However, part of the caregiving role is transferred to the teachers and guardians of the boarders.
The increase in demand for facilities for persons with DDs has been brought about due to several factors. The first is; healthcare systems in Kenya are better than they were 20 years ago and therefore there is a higher life expectancy of children with developmental disabilities. A second factor is reliability of the family network; the rate of marriage breakdown has increased meaning that there is a shrinking pool of a family networks to help the primary caregiver (often the mothers in this case). Lastly, the notion of the ‘family’ especially in Nairobi and its environs such as Kiambu, has shifted from the extended family which was larger, to nuclear family which is smaller. Overall, this increases the caregiving role by immediate family namely; parents.
5.3. How the Moral Model of Disability Leads to Mistreatment of Children with Disabilities
Globally, there has and still continues to be maltreatment of children with disabilities [42
]. According to Bunning et al. (2014), persons with disabilities often face abuse and mistreatment at the hands of minders, relatives and even in educational institutions in the area of Kilifi, Kenya [43
]. The acts of violence in educational settings have also been reported in European countries such as Switzerland [44
]. However, Switzerland is going a step further by creating a proper legal framework for what constitutes abuse and abusive treatments especially within the educational milieu [45
]. The aim is to hold any perpetrator accountable.
This study shows that, according to Table 1
, the majority of the violence committed to children with a DD, is perpetrated by other children who bully them at school. Also, the minders or house girls who are left to take care of the child at home, frequently beat the children. The children at primary school level are beaten more than their counterparts at secondary schools. Lastly, although low in number, there are children with DDs who also beat up other children.
According to focus group discussions; “We (high SES) often have two working parents and we have to leave the child in the hands of the minder or house girl. The advantage of the private schools that we enroll them in, is that they have strict policies against bullying and beating of our children. Unfortunately at home, we have no control over the house girls, because without them we cannot go to our workplaces” FGD High SES.
“We are forced to employ ‘shadow’ teachers for our children. These are teachers for special needs education who have recently graduated from the institutions such as KISE and Kenyatta University. Most are young and do not have an official job posting yet, so, we provide them with accommodation and transport to and from the school where the child with special needs is enrolled. We also pay them a monthly salary of between 15,000 to 20,000 shillings a month. The shadow teacher accompanies the child to the ‘regular school’ so that the teachers there do not complain of being overworked” FGD High SES.
According to the focus group discussions with parents; “It is often the children with Down syndrome that are bullied because others think they are retarded. Our children are sometimes called “Kiogo or kiũgũ” meaning, mentally retarded in Kikuyu language. Also our children are mistreated at school because some of the teachers already feel overwhelmed by the large number of children enrolled in public schools, so when our children fail to obey the teachers instructions, they are thoroughly beaten or given punishment. That is why we come here to KISE to get a warning letter written to the school or sometimes we want a transfer letter for the child to a different school, so KISE writes a placement letter recommending a school for us.” FGD low SES.
Another issue that was often discussed during the FGDs was the lack of educational certification for children with DDs. During an FGD, some parents whose children are enrolled in ‘regular’ schools stated that “once our children reach class 8, the school requests the parent to withdraw the child from sitting the final exam. Some tell us that the child will not be registered to do the Kenya Certificate of Primary Education KCPE, because his/her score will lower the overall performance of the school. The public schools like to maintain a high KCPE score in order to attract new parents to the school. So our children are excluded so that parents of ‘typical’ children can find the school attractive and their enrollment rates can remain high.” FGD High SES.
The government has gone a step further and started the model inclusive pre-primary school at KISE as a pilot institution for early childhood development. The research established that priority for placement is given to (i) parents who have more than one child with a DD and (ii) parents whose child with special needs has multiple disabilities.
According to an interview with a mother of two children with autism “The school is convenient for me because I live in Kasarani and can bring them here every day. Tuition is also free and they can have free speech therapy with the Catholic nun very frequently.” KII, 26 year old mother of two children with autism.