RBSK 2.0 misses disability lens, experts point out gaps in flagship child screening program

NEW DELHI: The Centre’s upgraded child health screening program RBSK 2.0 is facing criticism from disabled doctors’ groups across the country, who say it expands coverage but fails to make disability a core priority, potentially leaving millions of children without access to early diagnosis and care.Disability Doctors: Agents of Change, a group of health professionals with disabilities, said in a statement submitted to the Union Health Ministry that despite legal provisions and the global shift towards a rights-based health framework, the revised Rashtriya Bal Swasthya Karyakram (RBSK) does not meaningfully incorporate disability. The letter was signed by Professor (PhD) Satendra Singh on behalf of the collective.The plan continues to use a “4D” framework – birth defects, deficiencies, diseases and developmental delays – but does not explicitly include disabilities. The 124-page guidance document does not mention the word “disability”, raising concerns about compliance with the Rights of Persons with Disabilities Act 2016 (RPwD).Experts point out that conditions recognized by law as disabilities, such as thalassemia, sickle cell disease and hemophilia, are not included in the screening framework despite causing chronic illness and lifelong disability. India accounts for nearly 10% of the global burden of thalassemia, with an estimated 10,000-150,000 children affected.This omission marks a step back from RBSK 1.0, which included optional hemoglobinopathy screening. They were removed despite ongoing government parallel projects such as the National Sickle Cell Elimination Mission.The organization also noted a lack of disability indicators in program monitoring and a lack of linkage to unique disability IDs (UDIDs), weakening accountability.Public health experts stress that early screening is crucial. Globally, around one in 10 children have a disability and they are eight times more likely to die before the age of 17 than other children, underscoring the need for early identification and care.They argue that incorporating disability into screening is feasible and cost-effective. Point-of-care tests for diseases such as sickle cell disease require minimal training and can be deployed in rural settings. Global bodies, including the World Health Assembly, have been pushing for universal newborn screening.The group urges the government to expand the framework to explicitly include people with disabilities, include all people with specific disabilities under the RPwD Act, link to national registries and involve people with disabilities in program design and training.