Sickle cell: The battle for disability justice , Pg7

Key Highlights:

• In March 2024, the Indian government issued revised guidelines under the RPWD Act, 2016, regarding disability assessment for individuals with sickle cell disease (SCD).
• The RPWD Act, 2016 aims to protect the rights and inclusion of persons with disabilities, but excludes individuals with SCD from the 4% reservation quota in public sector employment.
• The Act defines benchmark disabilities as those with 40% or more impairment, entitling them to benefits like free education and reservations.
• Individuals with SCD often face challenges in obtaining disability certificates due to the certification process's limitations in capturing the condition's full impact.

Detailed Insights:

• The RPWD Act, 2016, aligning with the UN Convention on the Rights of Persons with Disabilities, seeks to ensure dignity, equality, and non-discrimination, but its implementation faces challenges.
• The 40% impairment threshold for benchmark disabilities excludes many individuals with SCD whose impairment falls below this mark, despite significant impacts on their lives.
• SCD is a debilitating blood disorder causing pain, fatigue, organ damage, and reduced life expectancy, disproportionately affecting marginalized communities like Adivasi and Dalit communities.
• Obtaining disability certificates, required for accessing benefits like pension schemes and income tax deductions (Section 80U of the Income Tax Act, 1961), is hindered by inaccessible certification processes.
• Reforms are needed to extend job reservations to individuals with SCD and reform the certification process to account for fluctuating and invisible disabilities, reflecting a rights-based approach.

Key Concepts Involved:

• Rights of Persons with Disabilities (RPWD) Act, 2016: Indian legislation protecting the rights and inclusion of persons with disabilities.
• Benchmark Disability: Disabilities with a minimum of 40% impairment, entitling individuals to specific rights and benefits.
• Sickle Cell Disease (SCD): A genetic blood disorder causing pain, fatigue, and organ damage due to abnormally shaped red blood cells.