For nearly 25 years, Nina Foundation has worked with thousands of people living with spinal cord injuries (SCI), helping them rebuild their lives through rehabilitation, counselling and access to assistive devices. Run entirely by spinal cord injury survivors, the Foundation has supported more than 3,000 underprivileged individuals through physiotherapy, education scholarships, livelihood support, wheelchair skills training, financial assistance for medical complications and peer counselling.
These achievements should have been a cause for celebration. Yet, as Nina Foundation marks its 25th year in 2026, one issue continues to overshadow our work. Despite advances in rehabilitation, assistive technology and disability rights, people with spinal cord injuries in India still do not have a distinct identity within the country’s disability framework.
This is not merely a question of terminology. It affects how people with spinal cord injuries are assessed, certified and recognised by the government, with implications for rehabilitation, welfare benefits, employment opportunities and even the quality of national disability data. Based on our work with spinal cord injury survivors and years of advocacy on this issue, we believe this is a gap that urgently needs to be addressed.
A spinal cord injury is usually caused by a road traffic accident, a fall from height, a sports injury or diseases affecting the spine such as tuberculosis or cancer. Damage to the spinal cord interrupts communication between the brain and the rest of the body. Depending on the level and severity of the injury, a person may lose movement and sensation either partially or completely.
For someone with a high cervical injury, the consequences are life-changing. A healthy young person may suddenly lose the ability to walk, stand, use their hands, control bladder and bowel functions or even change position in bed without assistance. Everyday activities such as dressing, bathing, eating or using the toilet often require continuous support from a caregiver.
A spinal cord injury is usually permanent. Although advances in surgery, rehabilitation and assistive technology have significantly improved quality of life, there is still no cure. Survivors often require lifelong physiotherapy, specialised wheelchairs, pressure-relieving cushions, urinary management products and regular medical care to prevent complications such as pressure sores, urinary tract infections and kidney damage. Many also face emotional trauma, disrupted education or careers, financial hardship and strained family relationships.
For persons with disabilities in India, the unique disability identity (UDID) card is much more than an identity document. It is the gateway to government welfare schemes, educational reservations, employment opportunities, income-tax concessions, travel benefits and access to assistive devices under various government programmes.
The UDID initiative is an important reform because it aims to create a single, nationally recognised disability identity while building a comprehensive database of persons with disabilities. In principle, this should simplify access to benefits and help policymakers better understand the needs of different disability groups.
However, our experience suggests that the system does not adequately recognise the unique realities of spinal cord injury.
The Rights of Persons with Disabilities (RPWD) Act, 2016 recognises 21 specified disabilities, including blindness, cerebral palsy, muscular dystrophy, Parkinson's disease and multiple sclerosis. However, spinal cord injury is not recognised as a distinct disability category.
Instead, people with spinal cord injuries are generally classified under the broad category of locomotor disability, while in some instances they are categorised under chronic neurological conditions. In our view, neither classification adequately reflects the lifelong functional limitations and rehabilitation needs associated with spinal cord injury.
This distinction is important because spinal cord injury is not simply a mobility impairment. It is a complex neurological condition with lifelong consequences that often require continuous medical management, specialised rehabilitation, caregiver support and accessible infrastructure.
Recognising spinal cord injury as a separate disability category would not diminish the importance of existing disability classifications. Rather, it would acknowledge that the needs of spinal cord injury survivors are distinct and deserve to be recognised accordingly.
Over the past decade, Nina Foundation has repeatedly raised this issue with the government of India through representations to the prime minister's office and the department of empowerment of persons with disabilities (DEPwD). Our advocacy is based not only on lived experience but also on our study of the disability certification process followed across the country.
One of our key findings is that spinal cord injuries are medically assessed using internationally accepted standards, but this consistency is often missing when disability certificates are issued.
Worldwide, doctors assess spinal cord injuries using the American Spinal Injury Association (ASIA) impairment scale, the internationally accepted standard for evaluating motor and sensory function after a spinal cord injury. A qualified orthopaedic, neurosurgeon or spine surgeon determines the level and severity of the injury based on detailed neurological examination and records it in the patient's medical documents.
In simple terms, the nature and extent of a spinal cord injury can be medically established using recognised scientific protocols. The challenge arises later, when the individual applies for a disability certificate.
To obtain a UDID card, an applicant must first complete the online application process and is then assigned a government hospital based on the address linked to their Aadhaar card.
In our experience, there is little standardisation in how different hospitals conduct these assessments. The composition of the medical board, the evaluation process, the number of visits required and even the final disability assessment can vary considerably from one institution to another.
More importantly, most people with spinal cord injuries are certified under the broad category of locomotor disability, even though spinal cord injury is a distinct neurological condition with lifelong rehabilitation needs. In some cases, survivors have even been classified under chronic neurological conditions, leading to further inconsistencies in the national disability database.
If the objective of the UDID programme is to create a reliable national record of persons with disabilities, then consistent classification is essential. Without a separate category for spinal cord injury, it is impossible to accurately estimate how many Indians are living with the condition or to plan services based on reliable data.
Under the RPWD Act, locomotor disability broadly refers to impairments affecting movement resulting from conditions involving the musculoskeletal or nervous system. While this definition is legally valid, it does not adequately distinguish between conditions that may have very different functional outcomes.
For example, a person affected by polio or a lower-limb amputation may, with appropriate assistive devices, be able to walk independently, climb stairs, drive a vehicle, pursue higher education, work full-time and manage most activities of daily living without assistance.
The challenges faced by many people with spinal cord injuries are often far more extensive. Depending on the level of injury, they may require lifelong assistance with transfers, bladder and bowel management, prevention of pressure sores, physiotherapy and specialised equipment. Many remain dependent on caregivers for routine daily activities, despite being fully capable intellectually and professionally.
The point is not to compare one disability with another or to suggest that one group deserves greater support than another. Rather, it is to recognise that spinal cord injury presents a unique combination of medical, functional and rehabilitation challenges that warrant separate recognition within India's disability framework.
The ministry of social justice and empowerment's revised disability assessment guidelines rightly emphasise functional evaluation rather than merely assigning a numerical disability percentage. However, our observations suggest that implementation remains uneven.
Nina Foundation has documented cases where individuals with similar levels of spinal cord injury have received markedly different disability percentages. In another instance, a person with traumatic quadriplegia was reportedly issued a disability assessment largely on the basis of an earlier certificate without a fresh functional evaluation by the medical board.
Such inconsistencies undermine confidence in the certification process and create uncertainty for people whose access to education, employment, welfare schemes and rehabilitation services depends on these assessments.
More importantly, they reinforce the need for a standardised approach that recognises spinal cord injury as a distinct disability category rather than subsuming it under broader classifications that do not adequately reflect its lifelong impact.
For people living with spinal cord injuries, the disability certificate is not merely an administrative document. It is often the starting point for rehabilitation, education, employment and independent living.
An appropriate disability identity can help ensure timely access to rehabilitation services, assistive devices and government welfare schemes. It can also improve mental well-being by acknowledging the lifelong impact of the injury and the support required to live with dignity.
When certification is inconsistent or the disability itself is not adequately recognised, survivors often find themselves navigating a fragmented system. Many continue to struggle with repeated hospital visits, delays in certification, varying disability assessments and uncertainty about the benefits to which they are entitled.
Beyond individual hardship, the absence of a separate spinal cord injury category also affects public policy. If people with spinal cord injuries are dispersed across different disability categories, it becomes difficult to estimate how many individuals are living with the condition, where they are located and what services they require. Without reliable data, policymakers cannot accurately plan rehabilitation facilities, community support programmes, caregiver services or long-term healthcare interventions.
Advances in emergency-care and rehabilitation mean that many people with spinal cord injuries today survive and go on to pursue higher education, careers and independent lives. Their disability does not diminish their intellectual ability or their potential to contribute to society.
However, meaningful inclusion often requires accessible infrastructure, assistive technology, flexible workplaces and an understanding of the unique challenges associated with spinal cord injury.
Many survivors remain financially dependent on their families not because they lack the ability or determination to work, but because suitable opportunities and support systems are limited. Better recognition of spinal cord injury within the disability framework can help shape policies that encourage education, skill development, employment and greater independence.
India's disability rights movement has evolved considerably over the past two decades. Several disability groups, supported by dedicated organisations and sustained advocacy, have successfully secured recognition for conditions that were previously overlooked.
The inclusion of disabilities such as cerebral palsy, muscular dystrophy, Parkinson's disease and multiple sclerosis reflects the government's willingness to strengthen and expand the disability framework as medical understanding has evolved.
Spinal cord injury deserves similar consideration.
The number of people living with spinal cord injuries continues to grow as road accidents, falls and other traumatic injuries increase. The condition affects people across all sections of society—construction workers, farmers, students, professionals, homemakers and young adults in the prime of their lives. Recognising spinal cord injury as a separate disability category would acknowledge its distinct rehabilitation needs and help ensure that policies are based on accurate medical classification rather than administrative convenience.
For more than a decade, Nina Foundation has consistently advocated the inclusion of spinal cord injury as a distinct disability under the Rights of Persons with Disabilities Act, 2016. We believe this would lead to more consistent disability assessment, improve the quality of national disability data and support the development of rehabilitation policies that better reflect the realities of living with spinal cord injury.
The RPWD Act was a landmark reform, expanding the number of recognised disabilities and strengthening the rights of persons with disabilities. It also envisaged that additional disabilities could be recognised as knowledge and policy evolved.
We believe the time has come to take the next step.
Recognising spinal cord injury as a distinct disability category would not merely address an administrative gap. It would acknowledge the unique and lifelong challenges faced by spinal cord injury survivors, improve consistency in disability certification and help ensure that rehabilitation, welfare and employment policies are better aligned with their needs.
For the millions of Indians living with spinal cord injuries, recognition is not about seeking special treatment. It is about ensuring that the disability framework accurately reflects their lived reality and enables them to participate fully and equally in society.
(
Dr Ketna L Mehta is a PhD in Healthcare Rehabilitation Management, author, researcher, educationist, founder trustee & editor, Nina Foundation, a 25-year-old NGO for spinal cord injured in India. www.ninafoundation.org)
Three points deserve the policymaker's attention.
First, certification under-measures the condition. SCI is presently subsumed within "locomotor disability" in the Schedule to the Rights of Persons with Disabilities Act, 2016. Assessment under Sections 56 to 58, read with the 2018 guidelines, produces a percentage anchored largely in mobility loss. Neurogenic bladder and bowel dysfunction, autonomic instability, pressure-sore risk and lifelong attendant dependence — the actual cost drivers — never enter the number on the certificate.
Second, the reservation arithmetic penalises the highest-support group. Section 34 provides 4% reservation, allocated as 1% each across four groups. An SCI survivor competes within the same 1% locomotor pool as conditions carrying materially lower support needs. The same distortion runs through Section 32 (higher education) and Section 37 (scheme benefits).
Third, the fiscal support is flat, unindexed and increasingly inaccessible. The disability deductions of ?75,000 and ?1,25,000 (severe disability) have stood unchanged since AY 2016-17, are a fixed sum unrelated to actual expenditure, and are available only under the old regime — which is no longer the default. An SCI household spending lakhs annually on catheters, consumables, pressure-relief equipment and attendant care receives, in practice, a shrinking benefit. On the indirect tax side, most assistive devices attract a concessional 5% GST under Notification No. 09/2025-Central Tax (Rate), yet adapted motor vehicles for persons with orthopaedic disability continue at 18% — an issue on which I have separately made a representation to the Hon'ble Finance Minister.
The remedy does not require fresh legislation. Section 99 of the RPWD Act, 2016 empowers the Central Government to amend the Schedule by notification. Recognition should then flow into a calibrated, expenditure-linked deduction for high-support disabilities available under the default regime, GST review on SCI consumables, and standardised health insurance underwriting under Sections 25 and 26 rather than blanket exclusion.
The fiscal cost is modest. SCI typically strikes people in their most productive years; enabling their return to work keeps them contributors to the tax base rather than dependants on it. That is sound policy economics, quite apart from being the right thing to do.
My compliments to Dr Mehta and the Nina Foundation team for a clear and well-argued piece.
CA Chirag Chauhan
FCA, LLB, CWM | CA Chauhan & Co., Mumbai
I request Honourable prime minister of India to look into the matter seriously on priority basis
I suggest Govt come out with online Portal so that anyone (victim or their family or care giver) from any remotest part of nation can log into it and notify and describe their condition and seek help.
India is a vast country and emergency care may not reach in time. Besides effectiveness of Critical care depends on various factors like location, time accessibility, knowledge and experience of care giver etc etc.
Spinal cord injury may result in different kinds of disability and few of them are not recoverable and will need lifelong support. Jungle has a Rule of Survival of the fittest but Human society is different. We can help each other and people also do that. SCIs need to have enough guidance to see through initial phases and learn how to survive rest of the life with their altered conditions. Govt support is never enough and every person of the society needs to take some responsibility. No one can guarantee lifelong support so SCIs need to learn to be independent quickly.
Nina Foundation also has the same goal of guiding and supporting SCIs in initial period and march them towards independence. Even all able bodied person is never fully independent. There is always interdependence. So SCI can seek help wherever they feel stuck. Any illness or injury coupled with poor financial condition and lack of relevant adequate knowledge results in poor outcome. Here people surrounding the victim have major role to play.
I do not think SCIs need to be on Record book for statistics. They should get support wherever it is due.
Dr. Himanshu Doshi MBBS
Trustee- Nina Foundation
?In clinical practice, subsuming SCI under the broad umbrella of "locomotor disability" completely overlooks the multi-systemic complexity of the condition. Unlike basic mobility impairments, an SCI impacts nearly every functional system below the level of injury. Survivors endure lifelong, painful complications that are rarely seen in general locomotor conditions—including severe pressure sores and bedsores, recurrent urinary tract infections (UTIs), neurogenic bowel and bladder dysfunction, chronic neuropathic pain, and secondary issues like piles.
?These complications demand continuous, specialized medical care, long-term therapeutic protocols, and structured rehabilitation rather than just basic mobility aids.
?The Government of India must take urgent action to update the RPWD Act, granting millions of SCI survivors their rightful, distinct identity. Formal recognition is the crucial first step toward building specialized rehabilitation frameworks, standardizing disability evaluation, and securing the right to dignified, comprehensive care for every survivor.
Dr Parinaz Humranwala, D.H.M.S & M.D in
Homoeopathy.
Trustee, Nina Foundation
Thank you, Dr. Ketna Mehta, for raising awareness and being a strong voice for the SCI community. Your efforts are helping bring much-needed attention to this important cause.
The biggest challenge is not the wheelchair itself—it is living with a condition that affects every hour of every day. A spinal cord injury is not just about the inability to walk. It brings lifelong medical complications, complete lifestyle changes, financial burden, and constant dependence on specialised care.
Unfortunately, our system still looks at spinal cord injury through the same lens as other locomotor disabilities.
In my experience, this is where the real problem begins. When the disability itself is not properly understood, the policies, healthcare systems, rehabilitation programmes, employment opportunities, and government support can never fully address our actual needs.
Recognising spinal cord injury as a distinct disability is not about asking for special treatment
. It is about ensuring that the unique challenges of people with SCI are acknowledged so that policies are based on reality rather than assumptions.
A person living with SCI spends a lifetime managing health risks that are invisible to most people but have a profound impact on dignity, independence, and quality of life.
I sincerely hope that policymakers look beyond definitions in the law and listen to the lived experiences of people with spinal cord injuries.
Sometimes, one correct recognition in policy becomes the foundation for decades of meaningful change. I hope this article starts that conversation at the highest level.
It’s a very well documented article highlighting how much this recognition is needed for
Most universal international graphic symbol denoting’Disability’ is a wheelchair ! Not a crutch, not a walking stick nor a Brace .
If one asks a common person , “who uses a wheelchair ? “
The first answer would be Spinal injury patients, paraplegics !!
Will anyone ever answer “ locomotor disease”
When such common sense association with wheelchair itself tells us , how common and important disability SCI is , how overwhelming is the incidence , why on earth someone would bundle it up in a generalised category under ‘ locomotor disability’ !
The categorisation should be otherwise ,
1) Spinal Cord injury ( as separate Category)
& then another category 2) Locomotor disease other than spinal injury .
I fully understand and endorse the views of the Author . Its time the government recognises this group of patients as a separate entity .
The way Dr. Ketna Mehta Ma'am of Nina Foundation has been working for the SCI people for many years, our life has become very easy...
I also feel seperate category for Spinal Cord Injury persons as we face many complex issues which a polio or amputee person does not face... Thank you Ketna ma'am for your support and guidance...????
Only when we recognise the problem first, can then we go about solving it. SCI strikes people usually in the prime of youth, when we are at our most productive. We need specialised institutional and medical support, both in trauma phase and life-long, to become the productive part of society that many of us have been fortunate to become. It’s critical to classify SCI as a distinct disability, and then leverage this identity to develop and deliver customised rehab solutions.
Nitin
Working as CFO Controller with Nokia
Proud member of Nina Foundation