The relationship between policy, disability and childhood development

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Background

Ethiopia

Ethiopia is located in the middle of the Horn of Africa (SIDA, 2014). Despite that Ethiopia is one of the most resource-rich countries compared to other African nations, it is still recognized as a low-income country with a gross national income per capita of 1,110 USD (Globalis, 2013; World Health Organization, 2013). It has been reported that previous conflicts have slowed down the development of Ethiopia significantly (SIDA, 2014).
The health status of Ethiopians is still profoundly low compared to high-income countries (World Health Organization, 2013). The population of Ethiopia is approximately 92 million, where 44% are under the age of 15 (World Health Organization, 2013). Major challenges in healthcare in Ethiopia is shortage of workforce, lack of funds, poor implementation capacity, and low prevention mother-to-child transmission of diseases (World Health Organization, 2013).
A study distributed surveys to 23 countries across Africa, including Ethiopia, to investigate the capacity and needs on child neurology (Whilmshurst et al., 2011). It concluded that neurology services were lacking in Africa. Barriers included lack of resources; access to facilities for the pediatric population was much limited; and lack in trained individuals. It was also reported that most training programs are overseas. Once trained the individuals tend to not return to their home country. Those who do return may be overwhelmed by the high demands and therefore leave.

The relationship between policy, disability and childhood development

In sub-Sahara Africa child health services have not been made aware to policy makers (Bakare et al., 2009). Lack of awareness may have great consequences to childhood development. Child poverty is closely linked to the denied access of various resources such as social, cultural, physical, environmental, political, and/or economics (Cockburn & Kabubo-Mariara, 2010). Limited government support can interfere establishment of services for children with disabilities (World Health Organization, 2011). Denied or limited access to services may result in high rate of child illness, disability and shorten life-expectancy (Cockburn & Kabubo-Mariara, 2010). This further contributes to a decrease of economic growth of the country as the population’s intellectual and physical potential is reduced by the fundamental deprivations of child poverty.*
The Convention Rights of Child state that every child has the right to develop to their fullest (World Health Organization, 2011). In developing countries children are exposed to multiple risk factors that can impact a child’s neuro-cognitive development, which further determines the socio-emotional, sensory-motor, and cognitive development (Maulik & Darmstadt, 2009). It has been estimated that 200 million children under the age of the five in Asia and Africa do not reach their cognitive potential (Grantham-McGregor et al., 2007). Accessibility to services, healthcare, and education has a strong impact in addressing these risk factors (World Health Organization, 2012).
The Ethiopian Constitution includes, “the universal right to education, and emphasizes the need to allocate resources and provide assistance to disadvantaged groups (art. 41 & 91), p. 1” (Ministry of Education, 2006). By 2015 the goal is to provide good quality primary education for all citizens of Ethiopia regardless of poverty, ethnic backgrounds, language, gender, learning difficulties and impairments. It has been identified that there is still a gap in providing access to education for all children that includes inopportune learning environments; lack of identification processes; lack of knowledge concerning diversity; and inadequate assessment procedures. This results in the teachers’ incapability of meeting the learning needs of the children. Currently existing special schools, such as NAC, have a long waiting list (Ministry of Education, 2006). Only less than 1% of children and students with special needs access primary education.
Without the appropriate early interventions it will limit the opportunity for the child to develop a meaningful participation in adulthood, as well as restricting the caregiver’s participation in society. When the rights of children are unmet this puts them and their families at risk for lifetime consequences. There is a great need among children with disabilities to be a part of an inclusive environment.

Autism Spectrum Disorder in Africa

Published reports regarding ASD in Africa is significantly limited (Malcom-Smith, Hoogenhout, Ing, Thomas, & Vries, 2013). Newton & Chugani (2013) report that the epidemiology data regarding the prevalence is non-existent in Africa. Barnevik-Olsson, Gillberg & Fernell (2008) investigated the prevalence of ASD among Somali children in Stockholm County, Sweden and the results showed that the prevalence was three to four times higher compared to other ethnicities. A follow up indicated that the prevalence increased (Barnevik-Olsson, Gillberg, & Fernell, 2010). A study from the United Kingdom reported that children of immigrants from the Caribbean and Africa had the highest frequency of ASD cases compared to other ethnicities (Keen, Reid, & Arnone, 2010). In Addis Ababa there are two schools that cater for approximately 120 children with ASD (Nehemiah Autism Center, 2015a; Nia Foundations- Joy Center, 2015). Addis Ababa has a population of about 3.4 million people (Ethiopia Tourism Organization, 2015). According to a study conducted in Sweden; the prevalence of ASD among children aged 0-17 living in Stockholm county is approximately 1% (Idring et al., 2012). Stockholm County has a population of 2 million (Statistics Sweden, 2013); when reflecting upon these statistics and the previously mentioned studies, it may be concluded that the ASD population in Addis Ababa is much larger than 120 children of 3.4 million people.
ASD is a developmental disorder that influences a person’s ability to interact, communicate, and relate socially to others (Case-Smith, 2001; Tonge & Brereton, 2011). It has a neurobiological origin, however the direct causation of ASD is unknown. The functional prognosis is diverse. Some cases will be independent, need minimal support, or dependent on caregivers. Regarding effective interventions an interdisciplinary approach is encouraged such as speech therapy, behavioral therapy, family support, occupational therapy, and special education programs. ASD is a life-time disorder and symptoms can change, therefore healthcare professions have a continuous role to educate, advise and support clients with ASD and their caregivers (Tonge & Brereton, 2011).
Two systematic surveys and one case-series addressed the features of ASD in Africa (Khan & Hombarume, 1996; Lotter, 1978; Mankoski et al., 2006). There were similar features to western children with ASD reported such as sensory distortion, epilepsy, poor coordination, and hypotonicity. Newton & Chugani (2013) stated that features of ASD in Africa differed from non-African nations: African children with ASD are diagnosed later in life, there is lack of awareness among healthcare workers, symptoms of ASD is seen as a spiritual cause, and majority of cases are non-verbal. A study from Tanzania indicated that 71% cases were non-verbal, compared to developed countries 25% of cases were non-verbal (Mankoski et al., 2006). It is argued that this major difference is due to that only extreme cases are accepted in special education schools attending to children with ASD in African. Children with ASD in Tanzania that have functional language are less likely to be diagnosed. From the case-series that Mankoski et al (2006) conducted showed that 3 children had normal childhood development until diagnosed with severe malaria, thereafter should symptoms of ASD. A relationship between severe malaria and language impairment has been reported in a study from Kenya (Carter, Murira, & Ross, 2003). This may suggest that severe malaria increases the risk to develop ASD. A study showed that co-morbid disorder associated with ASD among African children besides non-verbal is epilepsy and intellectual disability (Belhadj, Mrad, & Halayem, 2008). Intellectual disability made 60% of the cases.
Newton & Chugani (2013) stated that there is no literature regarding the management of ASD in Africa. Access to services is limited to a small group of children who attend at special education schools. In sub-Saharan African countries the lack of resources in the environment interfere with multidisciplinary management of ASD (Bakare et al., 2009). Bakare et al (2009) concluded that ASD awareness among health care workers in Nigeria was limited affecting the management of ASD.

Role of Occupational Therapy

Occupational therapists have an important role in attending to the various challenges experienced by people with ASD for instance dressing and bedtime routines (Ashburner, Rodger, Ziviani, & Jones, 2014; Schaaf & Blanche, 2012). In the United States occupational therapy was ranked second as the most frequently provided service for people diagnosed with ASD, this further highlights the significance of the role (American Occupational Therapy Association, 2008).
Occupational therapy services focus on enhancing participation and performance of activities of daily living (ADLs), education, play, leisure, rest and sleep, instrumental activities of daily living (IADLs ) and social participation within the person’s environment. The service follows a process which include evaluation, intervention, and assessing the outcomes from the intervention applied (American Occupational Therapy Association, 2008). These services can be provided at individual, organizational, and population level. The evaluation process is needed to gain insight of the client’s occupational profile and occupational performance. Thereafter evaluate the enablers and barriers to necessary and valued occupations of the client.
Currently Ethiopia does not have licensed occupational therapists (Occupational Therapy Africa Regional Group, 2015). Thirteen occupational therapists in Africa was interviewed regarding their role as occupational therapists (Sherry, 2010). Six main areas were identified with the role: networking, administration, planning & consulting, capacity -building, hands-on therapy, and advocacy (Sherry, 2010). It was reported by the therapists that in the African context a broader role must be adopted due to the lack of trained occupational therapists residing in the country. They also expressed that they had many different skills, but did not fully master one of them.

Person-environment-occupation-participation Model

Person-environment-occupation-participation model (PEOP-model) is used in occupational therapy practice to improve everyday performance of necessary and valued occupations (Baum & Christiansen, 2005b). It is an evaluation process, which allows the therapist to organize and investigate person and environmental factors that support, enable or restrict the client from participating in activities, tasks, and roles that are meaningful for them. The PEOP-model has four major components: the psychological, physiological, neurobehavioral, cognitive and spiritual aspects of the client (person), what the client needs and want to do (occupations), what occupations the client is doing (performance), and where the client is performing the occupations (environment). The interaction between the client’s capacity, their environment, and desired activity leads to occupation performance and participation (see figure 1).

Introduction
Background
Ethiopia
The relationship between policy, disability and childhood development
Autism Spectrum Disorder in Africa
Role of Occupational Therapy
Person-environment-occupation-participation Model
Assessing the needs of an organization
Aim
Method
Study design
Setting
Participants
Procedure
Sampling
Data collection
Data Analysis
Ethical Considerations
Results
Occupational performance issues
Enablers and barriers of the environment
Quantitative results
Qualitative results
Identified areas that an occupational therapist can contribute
Discussion
Method
Result Discussion
Role of Occupational Therapy
Further research
Conclusion
Implications and recommendations
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