Context

• The Supreme Court of India has issued notices in two key petitions seeking to include haemophilia under Section 34 of the RPwD Act for job reservations, but no final judgments have been delivered as of December 2025, with proceedings ongoing.
• Haemophilia is recognized as a specified disability under the Rights of Persons with Disabilities (RPwD) Act, 2016, but persons with it face gaps in accessing key entitlements like job reservations in public employment.

Evolution of Disability Law in India

The evolution of disability law in India from the Persons with Disabilities (PwD) Act, 1995 to the Rights of Persons with Disabilities (RPwD) Act, 2016 represents a significant shift from a charity-based, medical model to a rights-based, social model of disability.
The 2016 Act aligns India's legal framework with its obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which India ratified in 2007. 

Key Differences and Evolution
 

Feature	PwD Act, 1995	RPwD Act, 2016
Model of Disability	Medical and charity-based	Social and rights-based, recognizing that barriers hinder participation
Number of Disabilities	7 specified disabilities	21 specified disabilities, with the power to add more
Scope of Coverage	Primarily focused on government establishments	Covers both government and private establishments
Reservation (Govt. Jobs)	3% reservation	4% reservation for persons with benchmark disabilities
Reservation (Higher Education)	3% reservation in government-aided institutions	5% reservation in government and aided higher educational institutions
Accessibility Mandate	General clauses on a barrier-free environment	More concrete provisions with specified timeframes for compliance and emphasis on digital accessibility
Grievance Redressal	Provision for Chief and State Commissioners	Includes a Grievance Redressal Officer in every establishment and the creation of Special Courts
Penalties for Non-Compliance	Did not have explicit penalties	Specifies clear fines and imprisonment for offences

 
Major Advancements in the 2016 Act

• Expanded Definition: The RPwD Act provides a comprehensive definition of "person with disability" as someone with a long-term impairment who faces barriers to full societal participation. The increase in recognized disabilities includes conditions such as autism spectrum disorder, cerebral palsy, multiple sclerosis, acid attack victims, Parkinson's disease, and various blood disorders (thalassemia, hemophilia, sickle cell disease).
• Comprehensive Rights: The Act guarantees rights such as equality and non-discrimination, protection from abuse, living in the community, and reproductive rights.
• Inclusive Education and Employment: It mandates inclusive education in an appropriate environment, free education for children with benchmark disabilities between 6 and 18 years, and an obligation for employers to provide "reasonable accommodation".
• Accessibility and Justice: The law emphasizes creating a barrier-free environment in public infrastructure, transportation, and information and communication technology. It also ensures that the legal system is accessible to persons with disabilities.
• Legal Capacity: The Act introduces the concept of limited guardianship, which operates on mutual understanding between the person with a disability and the guardian, focusing on joint decision-making. 

Specified Disabilities under the RPwD Act, 2016

The 21 conditions are categorized into physical, sensory, intellectual, and blood disorders. The Central Government also has the power to notify any other category of disability. 

• Physical and Visual and Hearing Disabilities: Locomotor Disability, Leprosy Cured Persons, Dwarfism, Cerebral Palsy, Muscular Dystrophy, Acid Attack Victims, Blindness, Low-vision, Hearing Impairment (Deaf and Hard of Hearing), Speech and Language Disability
• Intellectual and Developmental Disabilities: Intellectual Disability, Specific Learning Disabilities (e.g., dyslexia, dyscalculia, dysgraphia), Autism Spectrum Disorder, Mental Illness
• Chronic Neurological Conditions and Blood Disorders: Multiple Sclerosis, Parkinson's Disease, Chronic Neurological Conditions, Thalassemia, Hemophilia, Sickle Cell Disease
• Other: Multiple Disabilities (including deaf-blindness, which means a combination of hearing and visual impairments) 

Compare legal rights and administrative entitlements

• Administrative entitlements offer specific benefits such as reservations and accessibility measures often limited to benchmark disabilities (≥40% impairment) and selectively implemented.?

Comparison Table
 

Aspect	Legal Rights (Universal for All PwDs) ?	Administrative Entitlements (Often Benchmark-Limited) ?
Scope	Equality (Sec 3), non-discrimination, dignity, community life, access to justice (Sec 12), legal capacity (Sec 13), guardianship support (Sec 14).	4% job reservation (Sec 34), 5% education quota, pensions, healthcare schemes, accessible transport/infrastructure, disaster records.
Applicability	All 21 specified disabilities; no impairment threshold. ?	Primarily benchmark (≥40%); exclusions like haemophilia from job quotas despite recognition. ?
Enforcement	Judicial access without discrimination; Commissioners monitor compliance. ?	Grievance officers (Sec 23), special courts; implementation via government notifications, often delayed. ?
Examples	Right to vote accessibly (Sec 11), property ownership. ?	UDID cards for benefits, priority in schemes; selective for locomotor vs. blood disorders. ?

 
Structural Issues and Ongoing Exclusion

Structural Issues

The primary structural challenges include:

• Weak Enforcement Mechanisms: Many states have not effectively framed or implemented rules under the Act, and monitoring bodies often lack the necessary authority and resources to ensure accountability.
• Inadequate Resource Allocation: There is suboptimal budgetary allocation for disability programs, and existing financial assistance like the disability pension is often insufficient to cover basic needs.
• Bureaucratic Hurdles: The process of obtaining essential documentation, such as the Unique Disability ID (UDID) card or a disability certificate, is often slow, cumbersome, and inconsistent, creating significant barriers to accessing benefits and services.
• Insufficient Data and Statistics: Fragmented and outdated data collection systems limit the government's ability to plan effectively, monitor progress, and tailor policies to specific needs. 

Ongoing Exclusion
These structural issues manifest as continued exclusion in key areas of life:

• Inaccessible Infrastructure and Transport: Most public buildings, schools, hospitals, and transportation systems lack proper ramps, elevators, and tactile paths, limiting independent mobility. The "Accessible India Campaign" has achieved only a fraction of its targets.
• Educational Barriers: A lack of inclusive schools, trained teachers, and accessible learning materials means a significant percentage of children with disabilities remain out of formal education.
• Employment Discrimination: Despite a 4% reservation in government jobs, many posts remain vacant. Private sector hiring is often tokenistic, with limited reasonable accommodations or flexible roles, pushing many into the informal sector.
• Societal Stigma and Attitudinal Barriers: Deep-rooted prejudices, stereotypes, and a "charity-based" approach rather than a "rights-based" model continue to marginalize persons with disabilities.
• Healthcare Gaps: Many healthcare facilities lack disability-friendly equipment and trained staff, and insurance companies may refuse coverage for pre-existing disabilities despite regulations against this. 

Haemophilia Litigation Matters

• Exposes Structural Flaw in RPwD Act: Haemophilia is listed among 21 specified disabilities and qualifies as benchmark (≥40% impairment) due to locomotor issues from joint bleeding, yet Section 34 omits blood disorders for 4% public job quotas, unlike autism or locomotor cases, creating unequal treatment.?
• Highlights Rights vs. Entitlements Gap: Recognition grants legal status but denies practical benefits like UPSC PwD quotas; Prema Ram (50% certified) couldn't apply for CSE 2025 prelims under PwD, underscoring how statutory inclusion fails without administrative alignment.?
• Tests Constitutional Equality: Petitions argue exclusion violates Articles 14 (equality), 16 (employment), and 21 (life/dignity), seeking interim relief and declaration of unconstitutionality.
• Empowers Broader PwD Community: Success could benefit thousands with rare/chronic conditions by closing implementation gaps, ensuring UNCRPD-aligned substantive equality, medical aid, and livelihoods beyond paper rights.

Challenges

• Inadequate Implementation of Expanded List: Despite inclusion in the 21 disabilities, institutional systems cling to pre-2016 categories, excluding haemophilia from Section 34's 4% job reservations and UPSC PwD quotas.?
• Lack of Authority Awareness: Recruiting bodies and exam conductors hesitate to recognize haemophilia for benefits, often rejecting benchmark certificates (≥40% impairment) due to unfamiliarity with locomotor impacts from joint bleeding.?
• Rigid Medical Fitness Norms: Stringent standards invalidate applications from blood disorder patients, overlooking chronic disabilities like haemophilia despite UDID certification.?
• Outdated Reservation Guidelines: Section 34 matrix fails to align with RPwD expansions, omitting blood disorders unlike locomotor or autism cases, perpetuating exclusion.?
• Social Barriers and Stigma: "Invisible" nature of haemophilia fuels stereotypes, limiting acceptance; under-diagnosis and scarce factor concentrates exacerbate sub-optimal care and dependency.?
• Certification and Access Hurdles: Delays in standardized assessments block entitlements; only 13,314 registered patients reflect service gaps, denying rehab and prophylaxis.

Way Forward

• Standardized Medical Assessment: Develop uniform guidelines for evaluating haemophilia's locomotor impairments (joint bleeding, deformities) to certify benchmark disability (≥40%) consistently across states, easing UDID access and benefit claims.?
• Update Reservation Matrix: Amend Section 34 notifications to include blood disorders alongside locomotor disabilities.
• Awareness and Capacity Building: Train recruiting bodies (UPSC, PSUs) and medical boards on RPwD expansions
• Strengthen Monitoring: Empower Chief Commissioner for PwDs and State Commissioners with enforcement powers, periodic audits, and penalties for non-compliance, supported by grievance portals.?
• Healthcare Integration: Expand factor concentrate supply, prophylaxis under Ayushman Bharat, and rehab schemes; link UDID to insurance waivers for rare diseases.?

Conclusion

The haemophilia litigation reveals a critical design flaw in India's disability framework—recognition without entitlements perpetuates exclusion for "invisible" conditions, undermining RPwD's UNCRPD-aligned promise of inclusion. Judicial intervention, alongside executive reforms, offers a pathway to bridge this gap, ensuring thousands access livelihoods, dignity, and equality.
 

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