Development of a Disability Literacy Scale for Caregivers of Children with Chronic Neurodevelopmental Disabilities (DLS-C)
We are proud to announce a ground breaking achievement in the field of disability care! Amar Seva Sangam, in collaboration with leading institutions across India, has developed the Disability Literacy Scale for Caregivers (DLS-C)—a first-of-its-kind tool to empower caregivers of children with neurodevelopmental disabilities. Published in Indian Paediatrics, this study marks a significant step toward inclusive, family-centred care.
About the Study
This multi-centric study was conducted across 10 prominent centers in India, including Amar Seva Sangam (Tamil Nadu), Satya Special School (Puducherry), DEIC Bengaluru (Karnataka), Trishla Foundation (Uttar Pradesh), among others. Led by the All India Institute of Medical Sciences (AIIMS), the research involved 323 caregivers and a multidisciplinary team of experts. The primary objective was to develop a reliable and culturally adapted assessment scale, tailored to the Indian context.
Key Outcomes & Importance
- Empowering Caregivers:
- The 24-item DLS-C assesses critical skills like knowledge of treatments, activity planning, goal-setting, and long-term care strategies—equipping caregivers to make informed decisions.
- Addresses gaps in therapy adherence, social inclusion, and access to support services, often hindered by low disability literacy.
- Evidence-Based Impact:
- High reliability (Cronbach’s alpha: 0.79) ensures the tool’s effectiveness in diverse settings.
- Five core domains identified:
- Treatment & support services (e.g., assistive devices, therapy techniques)
- Activity participation (e.g., sports, social inclusion)
- Collaborative goal-setting (e.g., therapy milestones)
- Lifespan concerns (e.g., adolescence challenges, genetic counseling)
- Self-help skills (e.g., daily living independence).
- Inclusive & Accessible:
- Translated into Hindi, Marathi, Tamil, Kannada, and Bengali to bridge language barriers.
- Co-developed with parents, therapists, and doctors to reflect real-world needs.
Why This Matters
- For Families: Helps caregivers advocate for their child’s needs and navigate healthcare systems confidently.
- For Professionals: Guides clinicians in tailoring counseling and interventions.
- For Policymakers: Provides data to design better caregiver education programs.
Our Role & Vision
As a key collaborator in this study, Amar Seva Sangam reaffirms its commitment to innovative, compassionate disability care. From early intervention to community rehabilitation, we strive to create ecosystems where every child thrives.
Access the full study here and learn how this tool can transform caregiving! – Development of a Disability Literacy Scale for Caregivers of Children with Chronic Neurodevelopmental Disabilities (DLS-C) | Indian Pediatrics
Join us in championing disability literacy—because every caregiver’s knowledge unlocks a child’s potential.
