Focus: From screening to assessment
Child disability measurement experts agree that screening efforts, such as interviews using the Ten Questions Screen (TQ), need to be followed by in-depth assessments. These allow the initial screening results to be validated, and make possible a better understanding of the extent and nature of child disability in a country. Cambodia, Bhutan and the former Yugoslav Republic of Macedonia are three countries to have undertaken such assessments. Their experiences provide important lessons for the measurement of child disability and adaptation of methodology to local context. They also testify to the transformative power of data collection.
In Cambodia, all children who screened positive under the Ten Questions and a randomly selected 10 per cent who screened negative were referred for further assessment by a multi-professional team consisting of doctors, hearing and vision specialists and psychologists. The team was trained and dispatched around the country to conduct child disability assessments in local health centres and similar facilities. The decision to use a mobile team of specialists was made to ensure consistent quality of screening across the country and to minimize the lag between screening and assessment.
The same sampling approach was employed in Bhutan, where the screening stage identified 3,500 children at risk, out of a sample of 11,370 children. A core team of seven professionals received two weeks of training in how to conduct the assessment. In turn, they were responsible for training another 120 health and education professionals. These professionals were then split into two groups. The first consisted of 30 supervisors recruited from among general-practice physicians, paediatricians, eye specialists, physiotherapists and special educators. The second group of 90 field surveyors and assessors was made up largely of primary school teachers and health workers.
The methodology used in the former Yugoslav Republic of Macedonia was derived from that used in Cambodia, with some adaptations shaped by the technical expertise and tools available in the local context. Two studies were conducted: a national study and one focusing on the Roma population. The assessment consisted of one hour with a physician and psychologist and a 10–15 minute assessment with an ophthalmologist and audiologist.
Experiences in all three countries demonstrate the importance of partnerships in mobilizing limited resources and ensuring high response rates, which in turn provide for robust findings. These partnerships involved government agencies and their international partners, disabled people’s organizations and other civil society organizations. In the former Yugoslav Republic of Macedonia, for example, partners made it possible to conduct assessments in local kindergartens during weekends, which was convenient for children and their families.
It is also important to adapt the composition of the core assessment team and the type of tools used to local capacity. At the time of the study, both Cambodia and Bhutan faced a shortage of qualified assessors.
In Cambodia this was overcome by employing a mobile assessment team, while in Bhutan emphasis was put on training mid-level professionals. The availability of specialists cannot be taken for granted – in the case of Cambodia, the lead hearing specialist was brought in from abroad.
Assessment tools – questionnaires and tests – should be locally validated and culturally appropriate. Careful attention must be paid to language. One of the challenges encountered in Cambodia pertained to translating assessment instruments from English to Khmer, and especially finding linguistic equivalents for the concepts of impairment and disability. The diagnostic assessment form used in the Cambodian study was revised to suit the former Yugoslav Republic of Macedonia and the local Chuturich test was utilized for the psychological component of the assessment.
Assessment leads to action
With assessment comes the potential for immediate intervention. In Cambodia, some children who screened positive for hearing impairment were found to have an ear infection or a build-up of ear wax. This limited their hearing and in many cases also their participation in school, but, once identified, their conditions were easily treated and more serious secondary infections and longer-term impairments were thus prevented.
Assessment can also aid awareness raising and spark change even while the processes of collecting and analysing data are still under way. When clinical assessments in Bhutan showed a higher incidence of mild cognitive disabilities among children from poorer households and those whose mothers had less education, the government decided to focus on early childhood development and childcare services in rural areas, where income and education levels are lower. And in the former Yugoslav Republic of Macedonia, findings that revealed unequal access to education have spurred plans to improve school participation and fight discrimination against children with disabilities.
A strategy for intervention on behalf of children identified as having a disability should be incorporated in the assessment from the earliest stages of planning. Such a strategy should include a mapping of the avail- able services, the development of referral protocols and the preparation of informative materials for families on how to adjust children’s surroundings to enhance functioning and participation in home and community life.