A disability-wise registry at the national level is the absolute minimum need, and the starting point to transform the quality of life for every person with disability in India.
The registry must be user-driven and entrusted to the nodal user organisation in each disability. Policy, interventions, lifestyle enablers and research must be underpinned by the registry.
I am a person living wonderfully well with a spinal cord injury for 30 years now. I was fortunate to be on the radar and guided to a high-quality institution for my rehabilitation (training in independent living), which enabled me to move ahead on all fronts, including going straight back to the Indian Institute of Management (IIM), Bangalore to complete my MBA programme.
Even today less than 10 per cent of people with spinal cord injury get timely access to quality rehabilitation. Of the rest, a small percentage self-rehabilitate; most wither away within the four walls of a room and the rest die unnecessarily prematurely.
The reality is not very different with other disabilities.
The root causes of woes
There are two reasons for the prevailing situation:
1) Barring a few, persons with disability are not identified at the earliest, which will be the time of birth for a congenital disability, or as soon as a person sustains a disability midway in life.
2) Best-in-class rehabilitation professionals head overseas, as compensation levels are unattractive in India.
The end result is that, despite well-meaning initiatives by the government, persons with disability are, at best, at the margins, if not beyond the radar of society. Sample just one example:
Two children with spinal cord injury studying in two different schools in Tamil Nadu. And in each of these schools, they are the sole ones using a wheelchair.
Another child in Marakkanam in Tamil Nadu has lost five school years due to a spinal cord injury and is still struggling to secure a school admission.
Out of radar, out of mind
Persons with disability are off the radar. That is why we see so few of them in schools, colleges, roads, theatres, restaurants, trains, buses and airports. The reason is not lack of accessibility.
To be equal and active participants in every aspect of society, persons with disability must be as independent as possible. This can happen only with timely, quality rehabilitation. This is not happening now as we do not capture the disability of every person at the earliest stage. This is why the India Disability Registry becomes paramount.
Every disability imposes varied needs on the lifestyle and health of the person. And most disabilities are for a lifetime. So no doctor or therapist or any other medical professional can ensure quality of life for a lifetime. Worldwide, peer network is the best lifelong support for persons with disability. A registry will expand the reach of the peer network in India.
Baby steps
We have disability certificates and, more recently, the UDID (Unique Disability IDentity) card, launched in 2017. The objective of the UDID include building a national database of persons with disabilities; issuance of UDID card; transparency, efficiency, and ease in delivery of government benefits with uniformity, and tracking physical and financial progress from the village to the national level.
Beyond Unique Disability ID
Much as the UDID serves a purpose, it does not empower persons with disability. We cannot have a ‘one-size-fits-all’ approach with centrality of only the government ecosystem.
To move the UDID towards an India Disability Registry, disability-wise, we need a few incremental steps:
1) Every UDID must capture the type of disability, year of occurrence and cause.
2) The database must be organised disability-wise in a granular manner.
3) Every hospital, doctor, para-medical professional and therapy clinic must be mandated to report every person presenting with symptoms of a disability to the centralised registry, with a well-defined data set. This will ensure that none of them is off the radar.
4) To comprehensively capture the stock of persons with disability, disability-wise, the upcoming Census 2021 must capture the data of every person with disability, and not just whether the person is disabled. India made a good beginning in 2011 by trying to map disability into the decennial Census. We must now go one step further so that we do not miss another ten years for building the India Disability Registry.
Census 2021 must capture type of disability, cause, year of occurrence, level of independence, type of assistive devices used and persons showing symptoms of disability. It would be great to involve persons with disability in the Census process so that the quality of data capture rests on knowledge and experience.
Replicable model
With the Census of India, telecom, technology, Aadhaar, voter ID, analytics and increasingly powerful user groups, India is placed well to put together the first comprehensive disability-wise registry at the national level in a public-private partnership.
We will become a role model for the rest of the world.
An India Disability Registry Ethics Board comprising persons with impeccable credentials (and including persons with disability) must be set up to identify disability-wise partner organisations for the India Disability Registry, and to monitor use, outcomes and impact.
Once we know where each person with disability is, targeted interventions for habitation, rehabilitation, quality assistive devices, education, livelihood, delivery of government benefits and sustained flow of research that drives policy and training will become possible. In 20 years, we will be able to enable all persons with disability to live to their fullest and highest potential, be equal contributors to the socio-economic growth of India and live with dignity.
(Spinal Cord Injury Helpline: 9677 199 299)
The writer is an IIM-Bangalore Distinguished Alumnus awardee, founder of The Ganga Foundation and CEO of Touch REHAB