Count them in

The 2011 census, conducted under the framework of the Persons with Disabilities Act, 1995 (PwD Act 1995), reported a disability rate of 2.3 per cent of the total population. However, with the broader definition under the Rights of Persons with Disabilities Act, 2016 (RPwD Act, 2016), experts believe this figure is significantly higher, potentially reaching 8–9%, or even as high as 14–15%. This discrepancy highlights the urgent need for a decadal census that aligns with the current legislative framework, providing an accurate portrayal of India’s disabled community. 

States need to move from existing identification procedures to document all 21 disabilities under the RPwD Act, 2016 (the PwD Act 1995 listed 7 disabilities). It is imperative to have a comprehensive database on disability to develop district-wise roadmaps for equitable and inclusive development. 

In India of 2011, out of a population of 121 crore, 2.68 crore individuals were classified as ‘disabled’, accounting for 2.21 per cent of the total population. 

Shockingly, 54 per cent of disabled children with multiple disabilities and 50% of those with mental illness have never attended educational institutions. This glaring disparity underscores the systemic barriers that hinder access to education for disabled children, perpetuating a cycle of exclusion and marginalisation. The Census 2011 also revealed that 8.3% (207.8 lakh) of total households in the country have disabled persons, with 71% residing in rural areas. Despite the prevalence of disability within households, the majority (99.34%) are classified as normal households, indicating a lack of institutional support or accommodation for disabled individuals. 

There is an urgent need for simple, mandatory screening of all children aged 0–18 years at the gram panchayat and urban ward levels to determine the prevalence of disability in India. Census personnel are not trained or equipped to enumerate disabilities, and mere sample surveys cannot identify all disabilities, leading to a high likelihood of missing invisible disabilities.

The RPwD 2016 also requires data on the number of people with disabilities, categorised by age, gender, education level, and impact on functioning. While paper-based solutions exist for some areas, especially those developed by the Department for the Empowerment of Differently Abled Persons and Senior Citizens, moving these to an electronic application covering all 21 types of disabilities is crucial. This transition will help plan services, prevent overlapping and duplication of data, and monitor social security and other support services and reservations. Such data collection must follow a life cycle approach, covering all 21 types of disabilities.
Rehabilitation professionals may not be available in rural areas. Way back in 2000, the Community Based Rehabilitation (CBR) Network, under the guidance of international experts Dr Einar Helander and Ture Jonhnsson, developed software for screening disabilities in children, including audiometry, vision testing, and developmental delays. They also developed AMAR (Analysis of Monitoring of Results of Rehabilitation) for measuring the impact of rehabilitation services, individual educational planning to enhance learning quality in inclusive or special schools, and TALC (Training Adolescents to Live in the Community) for the skill development of adolescents with diverse special needs.

However, the software developed needs upgrading to leverage recent technological advancements. It also needs to align with the latest technologies to ensure its use in telemedicine and tele-rehabilitation, as well as comply with government data security mandates. Tele-rehabilitation has the potential to dramatically change the way disability services are accessed, particularly in rural areas facing challenges from a lack of trained personnel in health and education. Tech-driven screening and data collection help keep data objective and hasten decision-making in rehabilitation.

Include caregivers

As someone deeply engaged in the field of special education, particularly autism, I have witnessed firsthand the challenges faced by individuals with disabilities and their families. One striking observation is the disproportionate burden placed on mothers, who often assume the role of primary caregivers. In many cases, these mothers, despite being professionally qualified, are compelled to forego their careers to provide dedicated care to their children. 

For instance, as a course coordinator for a diploma in special education (autism), approximately 80% of enrolled women were professionally qualified but had voluntarily withdrawn from the workforce to support their disabled children. This not only impacts disabled individuals but also leads to the exclusion of skilled and capable women from the labour force, resulting in an economic cost that cannot be ignored.

The exclusion of both disabled individuals and qualified women from mainstream society underscores the pressing need for inclusive practices across various domains—education, employment, healthcare, and social welfare. Failure to address this issue not only perpetuates inequality but also hampers the socio-economic progress of the nation. Along with advocating for the rights and inclusion of the disabled community, it is equally imperative to recognise the invaluable contributions of caregivers, especially mothers, and create an enabling environment that allows them to pursue their professional aspirations without compromising their caregiving responsibilities.

To this end, the Supreme Court recently inspired hope. The court held on April 22 in the Shalini Dharmani case that denying childcare leaves to a mother who is taking care of a child with disabilities would violate the constitutional duty of the State to ensure equal participation of women in the workforce. A bench comprising Chief Justice D Y Chandrachud and Justice J B  Pardiwala also directed the setting up of a committee headed by the Chief Secretary of Himachal Pradesh to take a policy decision on the issue of the grant of childcare leaves to working women with children with disabilities.

The call for a decadal census aligned with the RPwD Act serves not only
as a statistical necessity but also as a moral imperative.