Leveraging monitoring, evaluation, and learning to scale the Enabling Inclusion® program for children with disabilities in India and globally.

Introduction: Children with disabilities in low- and middle-income countries face many challenges and lack adequate services, including access to rehabilitation professionals. To address this lack of access, Amar Seva Sangam Ayikudy (ASSA), a non-governmental organization (NGO) in India, designed a technology-leveraged rehabilitation program called Enabling Inclusion® (EI®), and implemented it in one state (Tamil Nadu, India) before scaling it. The model is supported by the EI® app, which enables organizations to screen, assess and monitor progress of children with disabilities via rehabilitation specialists and community rehabilitation workers, and to provide family-centered, goal-based interventions. An extensive monitoring, evaluation, and learning (MEL) framework is embedded into the program. This paper explores how this MEL system supported the scaling of the EI® model, reaching additional beneficiaries nationally and globally. Methods: This paper describes ASSA's MEL framework and demonstrates its use for decision-making in the process of scaling. It also explores how collaborations with various government departments, NGOs, and private partners contributed to the scaling of the EI® model and technology. Results: Scaling of the EI® program was achieved by (1) expansion of the program in rural Tamil Nadu (vertical scale-up) in partnership with the Tamil Nadu government and private partners, and (2) by licensing the EI® app and model to other NGOs in various states in India and globally (horizontal scale-up). Systematic examination of key program and performance indicators, as well as stakeholder feedback, informed decisions to modify the EI® app over time. This included further customizing to the needs of children and service providers, covering a greater range of age groups and contexts, and modifying service delivery models. Child functional independence, participation, and inclusion was further strengthened by mobilizing parent empowerment groups, community awareness programs, school advocacy, and entitlements from the government. Flexibility in the implementation model of the EI® app allowed for adaptation to local contexts and organizations, and facilitated its scale-up. Conclusion: A dynamic, inclusive, and locally grounded MEL system, a flexible and collaborative approach, and an adaptive implementation model increased the accessibility of an early intervention and childhood rehabilitation program for children with disabilities and their families throughout the state of Tamil Nadu, across India, and internationally.

Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays.

BACKGROUND: This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-based early intervention programme in South India. METHODS: This prospective open cohort longitudinal study compared change from baseline to two years post-intervention among caregivers of the first cohort of children who were enrolled in the programme. Paired t-tests determined effect on the Modified Caregiver Strain Index (MCSI) and Family Empowerment Scale (FES), and p-values were adjusted for multiple comparisons using the False Discovery Rate approach. RESULTS: Of the 308 caregivers (91% women), 44% provided care to children with cerebral palsy and 56% to children with other developmental delays. The mean age of the children at baseline was 3.3 (±1.5 years). The overall mean change from baseline in the FES was 4.1 (95% CI: 3.3, 4.9; p < 0.001) representing improved empowerment. The mean change for the MCSI score was -3.7 (95% CI: -4.5, -2.9; p < 0.001) representing reduced caregiver strain. CONCLUSIONS: A family-centred early intervention programme that provides training and education to caregivers of children with developmental delays demonstrated positive change in caregiver strain and family empowerment.Implications for RehabilitationThe well-being of a child is influenced by the well-being of their caregiver.Improving caregiver well-being can help improve care and support for children with developmental delays.A family-centred early intervention therapy programme that includes training and education to caregivers can reduce strain and improve family empowerment.

Rapid-Cycle Evaluation in an Early Intervention Program for Children With Developmental Disabilities in South India: Optimizing Service Providers' Quality of Work-Life, Family Program Engagement, and School Enrollment.

Background: This paper explores how implementation and refinement of an early intervention (EI) program for children with delayed development was informed by an iterative, intentional and structured process of measurement. Providing access to early intervention therapy for children in rural areas of India is challenging due to a lack of rehabilitation therapists and programs. Following a biopsychosocial framework and principles of community-based rehabilitation, a non-governmental organization, Amar Seva Sangam (ASSA), overcame those barriers by designing a digital technology supported EI program in rural Tamil Nadu, India. Program objectives included providing service access; supporting program engagement, child development and school enrollment; and positioning the intervention for scale-up. This paper contributes to a growing body of literature on how program design and implementation can be informed through a cyclical process of data collection, analysis, reflection, and adaptation. Methods: Through several strands of data collection, the design and implementation of the EI program was adapted and improved. This included qualitative data from focus groups and interviews with caregivers and service providers, and a mobile application that collected and monitored longitudinal quantitative data, including program engagement rates, developmental progression, caregiver outcomes, and school enrollment status. Results: Measurements throughout the program informed decision-making by identifying facilitators and barriers to service providers' quality of work-life, family program engagement, and school enrollment. Consultation with key stakeholders, including caregivers and service providers, and data driven decision making led to continual program changes that improved service provider quality of work-life, program engagement and school enrollment. These changes included addressing gender-related work challenges for service providers; forming caregiver support networks; introducing psychological counseling for caregivers; providing medical consultations and assistive devices; creating community awareness programs; improving access to therapy services; focusing on caregiver education, motivation and support; and advocacy for accessibility in schools. Conclusion: The process of using evidence-informed and stakeholder driven adaptations to the early intervention program, led to improved service provider quality of work-life, greater program engagement, improved school enrollment and positioned the intervention for scale-up, providing lessons that may be beneficial in other contexts.