Pension for all, but is it enough? Mumbai families demand increase in disability aid

Alpana Sharma with her son Aarav. Pic/by special arrangement

THE Centre's 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 scheme.

However, caregivers and disability rights advocates say the monthly assistance of Rs 375 for beneficiaries below 80 years and Rs 625 for those aged 80 and above falls far short of the cost of long-term care. They are demanding higher, inflation-linked payouts, compliance with the Act's provisions and a simplified, single-window process for disability certification and Unique Disability ID (UDID) cards.

The issue resonates with mid-day's nine-part 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 care.

Wider coverage, but inadequate assistance

Alpana Sharma, founder-chairperson 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 governance.

"For 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 governance," she said.

However, Sharma said wider coverage must be backed by adequate financial assistance and simpler procedures.

"While coverage is now wider, Rs 375 and Rs 625 remain subsistence support. We urge the government to link it to inflation and to mandate 25 per cent higher support as envisaged in the Act," she said.

She added that families often struggle to find specialists and navigate the certification process. A single-window system with sensitised officials is needed to ensure every eligible child receives the benefit, she said.

Care costs exceed Rs 50,000 a month

For Madhuri Thorave of Vanjanwadi, Karjat, the expanded eligibility is welcome, but the financial support remains inadequate. Her 11-year-old son, Aahan, is bedridden and has 90 per cent disability due to SSPE.

"Obtaining certification remains cumbersome, and caring for my son costs over Rs 50,000 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 relief," she said.

For families caring for children with severe, long-term 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 procedures.

Pension must keep pace with inflation

Advocate Jamshed Mistry, who has been appointed amicus curiae by the Bombay High Court in several disability-related matters, welcomed the extension of eligibility to newborns but called for an urgent revision of pension amounts.

"The 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 inflation," he said.

Families facing lifelong medical, rehabilitation and caregiving expenses from birth need financial assistance that reflects the actual cost of care, advocates said. Without higher, inflation-linked payouts, they warned, the expanded coverage could fall short of providing meaningful relief.

At a glance: Revised pension assistance

Beneficiaries aged 0-79
Rs 375
Per month

Beneficiaries aged 80 and above
Rs 625
Per month

Key changes

- Lower disability threshold: Reduced from 80 per cent to 40 per cent.
- Eligibility from birth: The minimum age limit has been removed.
- Expanded coverage: An estimated 3.20 crore beneficiaries across 36 States and Union Territories are expected to benefit.
- Three-month rollout: Updated implementation guidelines are to be issued within three months.
- Other pensions unchanged: Old-age, widow and family benefit pensions will continue under existing provisions.

Aligning the scheme with disability law

The 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 Act's 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 inflation.

Simplifying certification and access

While 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 single-window 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.