Inclusion is not possible without data

The recent 80 per cent reduction in Karnataka’s disability funds is a significant setback in addition to several other challenges for inclusion efforts. Disability, listed under the state list in the Constitution, is also a Panchayati Raj Institution (PRI) subject, emphasising the need for community-level rehabilitation to ensure that they live with dignity, respect, and participation in mainstream development programmes.

India has signed and ratified many United Nations conventions, and the Convention on the Rights of Persons with Disabilities was signed and ratified in 2007. India is also committed to the United Nations Sustainable Development Goals Agenda 17, which has a special focus on the inclusion of disadvantaged persons in the development
of the nation to eradicate poverty. However, these commitments are hollow without robust data. Reports consistently show that people with disabilities (PwDs) are among the poorest in any community, highlighting the urgent need for targeted interventions.

India’s legislation has evolved, with the Rights of Persons with Disabilities Act, 2016, replacing the outdated Persons with Disabilities Act, 1995. This shift introduced a rights-based framework and expanded the definition of disabilities from seven to 21 categories. 

Yet, mere legislation and global declarations are insufficient. The absence of comprehensive data undermines all attempts at inclusion, leaving policies and programmes directionless.

As a first step towards achieving this vision, the government must have data on disability incidence and prevalence. India included disability in the 2011 census, with only seven types of disabilities as mentioned in the Persons with Disabilities Act 1995. As per Census 2011, out of the 121 crore population, about 2.68 crore persons are ‘disabled,’ which is 2.21% of the total population. For a country of India’s size and population, it is grossly under-reported data. The United States, in contrast, counts 14% of its population as having some type of disability as of 2022. It is also noteworthy that disability is more common among older individuals, with around 46% of those aged 75 years and older in the US living with a disability. With an ageing population contributing significantly to disability prevalence, India’s reported numbers appear grossly undercounted.

Without granular data at the state, district, and panchayat levels, planning effective rehabilitation services and ensuring equitable inclusion in development programmes remain impossible. 

Karnataka is a pioneer in bringing a circular and the guidelines, through an order in May 2020, for the allocation of 5% of the development budget for the preparation and inclusion of people with disabilities in the mainstream development programmes. However, this allocation can only be meaningful if accompanied by detailed, actionable data at gram panchayat and ward levels, which is currently unavailable.

Data: More than headcounts

Comprehensive disability data must go beyond enumeration. It requires: 

Mandatory screening of all at-risk individuals and children in the 0-18 years age group.

Diagnosis and assessment, which includes assessment of individual needs 

Disability measurement using standardised tools.

Issuance of Universal Disable Identity (UDID) cards to ensure access to social security. 

At the district level, there is a need to develop district disability inclusion road maps with databases/needs, budgets, and implementation strategies. There is no shortage of funds with 5% of the development budget allocated. However, the planning of rehabilitation services using this budget can be a reality only when all disabled persons are screened and assessed at the community level.

Technology can bridge gaps in data collection and service delivery. Karnataka’s Department for Rural Development and Panchayathi Raj and the Department for the Empowerment of Persons with Disabilities and Senior Citizens have developed screening methods, and organisations like CBR Network in Bengaluru have created software for screening, needs assessment, and district-level disability planning. Tele-rehabilitation services, supported by Internet connectivity, can link primary health centres and community health centres with multidisciplinary teams, bringing comprehensive care closer to communities. 

Karnataka has the potential to become a model state leveraging its 5% development budget directive, technology-enabled screening, needs assessment, and issuance of UDID for the development of district-level road maps for disability inclusion. But there is a need for political will. 

December 3, the UN International Day for Persons with Disabilities, serves as a reminder that inclusion is not achieved through tokenism or declarations but through actionable policies backed by robust data. Without accurate data, inclusion remains a pathless walk.