In July 2024, Delhi witnessed the death of 14 residents at Asha Kiran Shelter, a state-run residential institution for persons with intellectual and developmental disabilities. These deaths, linked to anaemia, malnutrition, and unsanitary conditions, occurred as the overcrowded shelter operated at twice its capacity with less than half the required medical staff. Yet, these deaths, primarily of young and middle-aged women with intellectual disabilities, prompted no productive Inquiry and consequently no accountability from the Delhi Government’s Department of Social Welfare.

This incident exposes the structural abuse faced by persons with disabilities (PwDs), especially from marginalised backgrounds, violating Article 21 of the Constitution, and India’s obligations under the UNCRPD (including rights to life, health, and data collection). Despite the landmark ruling of the Supreme Court of India in Rajive Raturi v Union of India which reinforces the rights of PwDs to dignified care and protection from inhuman treatment, disability institutions in India remain sites of invisible suffering. This blog argues that unless India begins to count, record, and publicly review every institutional death, the neglect of PwDs will remain hidden and unaddressed.

When Deaths Aren’t Counted, They Don’t Count

Section 176(1A) of the Criminal Procedure Code and the National Human Rights Commission (NHRC) guidelines mandate prompt reporting, post-mortems examinations and independent Judicial inquiries in all cases of custodial deaths. However, no parallel framework exists for deaths occurring within state-run or non-profit institutions housing PwDs despite India’s enactment of The  Rights of Persons with Disabilities Act, 2016 (RPwD Act).

Sections 3, 6, and 25 of the RPwD Act guarantee the right to dignity and healthcare, yet these provisions till date have remained toothless. Families are not timely notified of a resident’s death, no investigation is conducted to determine the cause of death, and no central registry exists to track such fatalities, amounting to zero accountability even when deaths recur. Such a vacuum renders disability institutions as zones of statistical invisibility and consequently legal and societal apathy.

Similar tracking in other avenues has helped India address long-standing issues. Maternal Death Review and Health Management Information System helped identify high-risk districts where maternal deaths were concentrated, prompting targeted interventions such as increased institutional deliveries, deployment of skilled birth attendants, and improved emergency obstetric care, thus, reducing maternal mortality from 130 to 97 maternal deaths per 100,000 live births. Similarly, the Poshan Tracker used real-time data to flag malnourished children, enabling customised nutritional supplementation. Lack of a similar measure in case of mortalities in disability institutions leaves the problem of systemic neglect undiscovered and therefore unspoken.

International Practice: Where Deaths Trigger Review

Several countries treat deaths in disability institutions as triggers for mandatory reviews, audits, and public reporting – essential for early warning, accountability, and reform.

In the United Kingdom, the Learning Disabilities Mortality Review Programme (LeDeR), established by NHS England, mandates structured, multi-agency reviews of all deaths of persons with learning disabilities In the United States, Medicare and Medicaid-certified care homes are mandated to report all deaths via the Minimum Data Set (MDS) to the Centre for Medicare & Medicaid Services (CMS), which uses this data to flag unsafe facilities and trigger inspections or de-certification. Similarly, a national death review program with independent oversight for all deaths in disability residential services was also suggested by Australia’s Royal Commission. Even the European Court of Human Rights in Nencheva v. Bulgaria, has affirmed that states have a positive duty to protect life and investigate institutional deaths.

Thus, the message on the global scale is clear: counting deaths is the first step toward preventing them.

Towards a National Disability Mortality Registry (NDMR)

To address this legal black hole surrounding deaths in institutional care, India urgently needs a National Disability Mortality Registry (NDMR) to enforce a comprehensive oversight system. First, a Mandatory Dual Notification Protocol should require written and verbal communication of every institutional death within 48 hours to both the next of kin and the relevant regulatory authority. Second, independent medical audits must verify the cause of death and detect negligence. Third, a tiered reporting framework should be put in place: a single death would trigger routine reporting and audit; more than three deaths in thirty days would mandate an automatic state-level inquiry, and any indication of systemic neglect would lead to emergency inspections and temporary suspension of admissions. To ensure transparency, the NDMR should maintain a public dashboard with anonymised data, and penalties, including de-licensing of institutions, must be imposed for non-compliance.

This isn’t just a procedural reform – it is a constitutional obligation under Article 21, the RPwD Act, and India’s UNCRPD commitments. By recording age, gender, disability type, cause of death, and duration of stay, the NDMR can uncover patterns of systemic abuse and neglect, ensuring that institutional deaths are neither invisible nor ignored.