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Purpose: This study was designed to translate and assess the psychometric properties of Supports Intensity Scale among adults with intellectual and developmental disability in Ahvaz and Tehran, Iran.

Method: The cross-sectional study was carried out in two stages. The first stage consisted of the forward-backward translation of Supports Intensity Scale - Adult Version) SIS-A(. In the second stage, 197 people with intellectual and developmental disabilities were recruited in order to assess the internal consistency and test-retest reliability, concurrent and content validity of SIS-A. The confirmatory factor analysis (CFA) was performed to approve the seven-factor model of the instrument.

Results: The intra-class correlation coefficient values varied between 0.85 and 0.99 (very good to excellent). All subscales of the SIS-A showed Cronbach’s alpha above 0.70. Correlation coefficient between SIS-A and Barthel index was about -0.65, which shows excellent concurrent validity of SIS-A. The findings showed SIS-A had high ability to discriminate between groups with different IQ (p<0.05). There was no significant correlation between SIS-A and the age of participants (p>0.05). The result of CFA confirmed that the seven-factor model of SIS-A is the fittest pattern for SIS-A.

Conclusion: The results indicated that the Persian version of SIS-A is a valid and reliable instrument to assess function and disability among people with intellectual and developmental disability.

Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.

Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.

Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.

Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.

Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. 

Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America.  

Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), only around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conduct evaluation, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation.

Conclusions and Recommendations:  Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in evaluation processes. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international developm

Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

Purpose: Speech-language pathologists in Malaysia typically do not work within CBR. Therefore, exploring the use of services through a non-traditional student placement was a crucial first step in understanding how to develop capacity for such services. It was also important to develop an understanding of the ways in which the implementation of this student placement influenced learning in the context of a Malaysian CBR programme.

Method: An action research study was designed to implement and evaluate student speech-language pathology (SLP) placement within a Malaysian community-based rehabilitation (CBR) centre for children with communication disabilities. Data collection involved the learning experiences of key adult stakeholders (students, workers, parents, and the principal research investigator (PI) or lead author).

Results: Study findings indicated that all adult learners became better empowered by working together. Workers involved in impairment-focussed rehabilitation activities grew in understanding and skills when supported by relevant professionals.The importance of mentoring as a learning-teaching relationship was demonstrated.

Conclusion: While the study has indicated that the setting is beneficial as a student placement, the development of a specialisation in CBR for allied health professionals would be a relevant way forward in the Malaysian context.

Purpose: A literature review was undertaken to determine (a) what is currently being done to bring out-of-school children into schools and retain them there; (b) what has succeeded in bringing out-of-school children into schools and retaining them;and (c) what is being done to bring out-of-school children with disabilities into schools?

Methods: Various databases were searched to identify relevant articles for the review. Only articles published after the year 2000 were included in the analysis.

Results: A total of 23 articles were reviewed. The review identified economical, socio-cultural and school-related variables that contribute to children being excluded from schooling. Various strategies that have worked to bring out-of-school children into schools include alternative education, rebates and incentives, and community awareness programmes.

Conclusions and Implications: The review found that there is insufficient research on out-of-school children with disabilities. However, research on the population of children without disabilities has implications that can be relevant to children with disabilities.

Purpose: There is limited guidance available on the best ways to evaluate community-based rehabilitation (CBR) programmes. In this paper, we share lessons learned on suitable evaluation strategies for CBR through a South African programme evaluation.

Method: An empowerment evaluation of an early childhood development programme was conducted in April 2012. At the end of the field visit, parents, staff members and managers provided feedback anonymously about what they liked and disliked about the evaluation, and offered their suggestions. The principal investigator documented the evaluation process in a journal, recording the barriers and facilitators encountered, the participation of the 3 groups and the effectiveness of the different strategies used. The data analysis followed the principles of grounded theory.

Results: The main lessons learned about CBR programme evaluation are associated with strategies to: 1) foster active participation, 2) collect accurate and credible information, 3) build local capacity, and 4) foster sustainable partnerships. Time spent to promote a positive learning spirit and the use of participatory tools with all groups appeared critical to active engagement in evaluation activities. Sharing tools and experiences in context built more local capacity than was achieved through a formal workshop. The findings also highlight that a flexible model, multiple data collection methods, and involvement of all relevant stakeholders maximise the information gathered. Sensitivity to the impact of culture and to the reactions generated by the evaluation, along with ongoing clarifications with local partners, emerged as core components of sustainable partnerships.

Conclusion: CBR evaluators must use a variety of strategies to facilitate active engagement and build local capacity through the evaluation process. Many of the strategies identified relate to the way in which evaluators interact with local stakeholders to gain their trust, understand their perspectives, facilitate their contribution, and transfer knowledge. Further research is needed on how toconduct empowering CBR programme evaluations.

Purpose: The Rapid Assessment of Disability (RAD) questionnaire was developed to provide governments and development agencies with an appropriate instrument to determine the prevalence of people with disability within theirtarget populations, and to design and evaluate the effectiveness of disability inclusive activities in addressing their priorities and needs.

Method: The RAD questionnaire was developed using two conceptual frameworks: the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and the International Classification of Functioning, Disability and Health (ICF). Existing instruments were reviewed to inform the structure and content of the RAD questionnaire. The RAD questionnaire that was developed for field testing in Bangladesh comprised both a household questionnaire and a questionnaire for individuals within each household, with 5 sections: 1) Demographic information, 2) Assessment of functioning, 3) Awareness of rights of people with disability, 4) Well-being and quality of life, 5) Participation in the community. Prior to field-testing the RAD questionnaire in Bangladesh, a qualitative study was conducted to ensure the relevance of the questionnaire in the context of a developing country. In-depth interviews with 9 people with disability and a focus group of 8 parents of children with disability were conducted in Dhaka, Bangladesh. 

Results:Qualitative findings highlighted factors relevant to the lives of people with disability in Bangladesh, including discrepancies between the awareness and attainment of rights for people with disability, the wellbeing of people withdisability and their families, as well as numerous barriers to full participation in their community. While the findings confirmed that the design and content of the questionnaire reflected all these aspects, some changes were made to the items in the questionnaire to ensure that it reflected the views of people with disability from the context of a developing country.

Conclusion and Implications: This qualitative study was an important step in the development of the RAD questionnaire as it helped to achieve its aim - namely, to establish the prevalence of disability and to assist in the design and evaluation of disability inclusive interventions in the setting of a developing country.