Mumbai: Disability pension reform welcomed, but caregivers say Rs 375 a month is inadequate

The Centrersquos decision to align the Divyangjan Pension Scheme with the Rights of Persons with Disabilities RPwD Act 2016 has been welcomed by parents of children with disabilities and rare diseases Removing the minimum age limit and lowering the benchmark disability threshold from 80 per cent to 40 per cent will expand eligibility offering financial support to families previously excluded from the schemeMadhuri Thorave with her 11yearold son Aahan who has 90 per cent disability due to SSPE PicSayyed Sameer AbediHowever caregivers and disability rights advocates say the monthly assistance of R375 for beneficiaries below 80 years and Rs 625 for those aged 80 and above falls far short of the cost of longterm care They are demanding higher inflationlinked payouts compliance with the Actrsquos provisions and a simplified singlewindow process for disability certification and Unique Disability ID UDID cardsThe issue resonates with middayrsquos ninepart investigative series Adhoora Bachpan published between August 17 and 26 2026 The series examined Subacute Sclerosing Panencephalitis SSPE a rare progressive and fatal neurological disease that can develop years after a measles infection leaving children severely disabled and requiring lifelong careWider coverage butAlpana Sharma founderchairperson of the Cure Spinal Muscular Atrophy SMA Foundation and a Navi Mumbai resident whose son Aarav has SMA type 2 welcomed the expanded eligibility calling it a progressive step towards inclusive governanceldquoFor families with spinal muscular atrophy SMA and rare diseases who bear huge costs from day one extending pension from birth is a compassionate and progressive step towards inclusive governancerdquo she saidHowever Sharma said wider coverage must be backed by adequate financial assistance and simpler proceduresldquoWhile coverage is now wider R375 and R625 remain subsistence support We urge the government to link it to inflation and to mandate 25 per cent higher support as envisaged in the Actrdquo she saidShe added that families often struggle to find specialists and navigate the certification process A singlewindow system with sensitised officials is needed to ensure every eligible child receives the benefit she saidCare costs exceed R50000 a monthFor Madhuri Thorave of Vanjanwadi Karjat the expanded eligibility is welcome but the financial support remains inadequate Her 11yearold son Aahan is bedridden and has 90 per cent disability due to SSPEldquoObtaining certification remains cumbersome and caring for my son costs over R50000 monthly for diapers therapy and medicines The current pension is barely a fraction of our actual expenses If the government cannot substantially raise the payout immediately it must at least provide subsidies or discounts on essential medical supplies to offer families meaningful reliefrdquo she saidFor families caring for children with severe longterm disabilities recurring medical and caregiving expenses can place an enormous strain on household finances Caregivers say wider eligibility will offer limited relief unless accompanied by higher pensions medical subsidies and simpler certification proceduresPension must keep pace with inflationAdvocate Jamshed Mistry who has been appointed amicus curiae by the Bombay High Court in several disabilityrelated matters welcomed the extension of eligibility to newborns but called for an urgent revision of pension amountsldquoThe intention of enhancing the coverage right up to newborn children is most welcome and falls very well within the objectives of disability legislation in India However one hopes that the government will swiftly enhance the quantum of pension so that the amount received is meaningful and in keeping with inflationrdquo he saidFamilies facing lifelong medical rehabilitation and caregiving expenses from birth need financial assistance that reflects the actual cost of care advocates said Without higher inflationlinked payouts they warned the expanded coverage could fall short of providing meaningful relieflsquoRelook at pensionrsquoAdvocate Jamshed Mistry who has been appointed amicus curiae by Bombay HC in several disabilityrelated matters said ldquoOne hopes that the govt will swiftly enhance quantum of pension so that amount received is keeping with inflationrdquo he saidAt a glance Revised pension assistanceBeneficiaries aged 079Rs 375 per monthBeneficiaries aged 80 and aboveRs 625 per monthKey changesLower disability threshold Reduced from 80 per cent to 40 per centEligibility from birth The minimum age limit has been removedExpanded coverage An estimated 320 crore beneficiaries across 36 States and Union Territories are expected to benefitThreemonth rollout Updated implementation guidelines are to be issued within three monthsOther pensions unchanged Oldage widow and family benefit pensions will continue under existing provisionsAligning the scheme with disability lawThe National Social Assistance Programme NSAP launched in 1995 under Article 41 of the Constitution is being aligned with the RPwD Act 2016 according to the information provided for the scheme The revised benchmark disability threshold is 40 per cent Advocates point to the Actrsquos provision that disability assistance should be at least 25 per cent higher than comparable welfare support They want the government to ensure that pension amounts reflect this requirement alongside a revision linked to inflationSimplifying certification and accessWhile extending eligibility from birth is a step towards inclusion families say obtaining disability certificates and UDID cards can involve repeated hospital visits and delays particularly where specialists are unavailable Advocates are calling for a singlewindow certification process to reduce procedural hurdles and help eligible families access benefits without unnecessary delays They say wider coverage must be accompanied by adequate financial support and a simpler application process to make the scheme effective for caregivers