- Disability certificate
not enough, families struggle to secure Aadhaar and government benefits
Eighteen-year-old
twins, Yongkhong and Hankum, with their mother.
- DIMAPUR — Aadhaar, the 12-digit biometric identity number introduced to
streamline India’s welfare schemes, was envisioned as a tool of empowerment.
However, for families of persons with disabilities (PwDs) in Nagaland, it has
become a barrier, as they struggle to obtain Aadhaar cards for their children.
- Viholi and Thungchamo Lotha, residents of Dimapur, have been
trying for years to secure assistance for their 16-year-old son, Nchumthung,
who has post-epileptic quadriplegia. He has been bedridden since a severe
seizure at the age of seven caused extensive brain damage and led to
quadriplegia (paralysis of all four limbs).
- Despite possessing a disability certificate from the Dimapur
District Hospital categorising his condition as “100% permanent
impairment/mental disability,” Nchumthung has been unable to access government
schemes due to the lack of an Aadhaar card.
- According to his parents, multiple enrolment centres in
Dimapur have denied his registration. “When we inform the centre operators
about his condition, they tell us that it cannot be done. We are willing to
carry him to the centre and wait the whole day to get it done, but we are not
even given that option,” said Viholi.
- Without Aadhaar, Nchumthung has been unable to obtain a
Unique Disability ID (UDID), which is required to access government benefits,
including disability pensions and assistive devices. The family recently
attended a disability aid distribution camp, hoping to get a wheelchair for
him, but were informed that he was ineligible due to the absence of a UDID.
- Thungchamo explained that at present, the family spends
around INR 5000-6000 per month on his son’s medication, digestion aids,
suppository pills, and diapers.
- Without an Aadhaar card, he is also excluded
from the Chief Minister’s Health Insurance Scheme (CMHIS) under his father’s
policy, which could have eased some of the costs.
- The couple also stated that they were not even aware of
government schemes such as the Indira Gandhi National Disability Pension Scheme
or other state schemes.
- Across town, at 7th Mile Model Village, Alem Chang, a
retired teacher, faces the same struggle for his 18-year-old twins, Yongkhong
and Hankum, both diagnosed with cerebral palsy (CP)—a neurological disorder
affecting movement and posture.
- Like Nchumthung, the twins are trapped in a Catch-22: No
Aadhaar, no UDID; No UDID, no wheelchair, pension, or insurance.
- According to the Unique Identification Authority of India
(UIDAI), individuals unable to provide biometric data due to a disability can
be enrolled using facial recognition and an authorised disability certificate.
Home enrolment is also an option for those unable to visit Aadhaar centres.
- However, both the families said they were unaware of these
alternatives and that Aadhaar centre staff did not inform them of any
solutions.
- “I have run from pillar to post for the last two or three
years to get their Aadhar registration done, but they keep telling us that it
can’t be done. It has been hopeless,” Chang said.
- The retired teacher, who is also actively involved in
networking with other families of PwDs, said that there are at least eight or
nine blind persons or individuals with missing limbs in his locality who have
not been able to register for Aadhaar.
- Chang said his children’s lives depend entirely on parental
care. They require assistance with eating, bathing, and using the bathroom.
- Sharing about their condition, he said that the twins were
diagnosed at the age of two. Their disability certificates confirm that both
have a ‘90% disability’ with a ‘non-progressive’ condition. Hankum, the younger
sibling, also has a ventricular septal defect (VSD), a congenital heart
disease.
- The family has accepted that their conditions are
irreversible but remains concerned about their quality of life. “Now the only
thing is to give them a good quality of life for as long as they are with us,
but how can we do that when we are not even given the bare basics?” he asked.
- Beyond the struggle for Aadhaar enrolment, Chang raised
concerns about the absence of guidance for caregivers of PwDs.
- “There are no institutions guiding parents who are primary
caregivers on how to take care of their disabled children,” he said. “Children
with cerebral palsy require a different kind of care from those with Down’s
syndrome or other disabilities, and yet there is no structured support or
training.”
- “Everything we are doing to take care of our children is
done, unfortunately, through the trial-and-error method,” he added.
- According to him, activists working with PwDs often focus on
issues like travel concessions and employment reservations, but fundamental
issues are being overlooked.
- “When a disabled person is unable to live a life of dignity,
even in their own home, what’s the use of a reserved flight ticket?” he asked.
- This report is facilitated by the Sarthak LIC HFL
Initiatives.
