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Indefinite wait for benefits

In this age of information at your fingertips, some parents of children with disability have no idea of the benefits of a Disability certificate, those who do have a long wait to acquire it

Outside room number 214 (a) of Delhi’s Ram Manohar Lohia Hospital, mums and dads with their children wait to get an assessment and to submit forms for a disability certificate.

One such individual is Chandeshpar Das, a man in his 40s who up until six months ago, didn’t know why his 16-year-old son was unable to learn anything at school and was different from his two older children.

But a test on learning disabilities in school proved that Suraj Kumar was not just a teenager disinterested in books. “His tuition teacher would beat him a lot but still he would not concentrate and could not learn anything. He failed twice in 9th standard”, Kumar’s father tells us, confessing that the school kept passing him, “else he would not have even reached this stage”.

His son, having gone through numerous medical tests, now waits for a certificate, thinking maybe this time enough has been done to convince the panel.

After some time, their chance comes to know the verdict and the two disappear into the room.  They emerge with the certificate which Das hopes will give his son a new lease at life. “I want to put him in a special school, this will help him. It will also allow us to get other facilities that will make his life and ours easier”, Das tells us, showing the paper which spells out that Kumar has an intellectual disability with IQ of 48 and 75% “disability”.

Unfortunately, teachers at his school were unable to gauge the seriousness of the cause for his inability to learn. His class teacher even told the parents to remove him from school and find him work. “How could I do that? I haven’t been to school but I want my children to do well. I work at a packing unit where I don’t want to take him there. Now there is a chance for him to do something else”, Das tells us.

Kumar’s struggle to get a certificate is not unique to him; every person going inside to the designated room of the hospital has the same complaint of the long process.

The Disability Certificate enables the person to obtain various allowances, scholarships, and reservation in higher education & jobs, services and other facilities which are provided by Central and State Governments.

One such provision is the pension scheme whereby the central and or the state government provide financial assistance to persons with special needs. The Delhi government has implemented its disability pension which is a fusion of State as well Central Government contribution, with a total grant of Rs 2,500 per month.

This is a scheme which will benefit Pooja. She is another parent waiting in the queue to show reports of tests that her son was asked to undergo. Five-year-old Prateek has partial disability on his left side, making him unable to use his left arm and leg.

It has taken a year of running around to get a certificate. First she faced an information gap. It was not easy to find where the certificate would be issued. “I went to Maharishi Valmiki Hospital who sent me to Dr Babasaheb Ambedkar Hospital from there they sent me to Sanjay Gandhi Memorial, who then asked me to go to GB Pant and finally here to RML”, she tells us, recalling the arduous task.

There are two benefits she seeks from this document – one for her child to get admitted to a good school and the other, the pension scheme, as it’s time for her to worry about old age. But Pooja’s task has not ended still. After a good few months of running around to get tests, and getting her child examined by seven different doctors, she was told this morning about another check which has to be conducted, for cerebral palsy.

Deepa Malik, an international sportswoman (shot put, javelin and motor rallying) and India’s first woman to win a medal in Paralympic Games, tells us about the need for more panels who can give Disability Certificates and how important it is to raise awareness about the schemes.

Her foundation Wheeling Happiness, which she co-founded with her daughter Devika, tries to raise awareness in villages of the country.

“We recently found an 11-year-old boy in Bhambhewa village, Haryana. Dhananjay was very excited about going to school but his parents would drop him to his bench in his classroom where he would remain all day till he was picked up in the end of the school day. So, we got him a wheelchair and a toilet chair.”

Malik gives this example to show how information on “gadgets and assistive aids” for persons like Dhananjay has not reached their ears.  There are about 50% people, she says, who don’t know about the certificates, benefits and help they can get. “In Gurgaon, for example, Wednesday is when you have to report in the government district hospital. A panel then assesses the person and sees if a certificate should be given. Sometimes the panel isn’t even sitting and the villagers come from over 50 km away”, Malik points out.

“The panel should be there on designated days and they (the government) must spread more awareness”, she says. One of the reasons she took part in road rallies was to raise awareness. But even this came after a long-drawn effort.

“I was travelling abroad a lot for my sports and they had gadgets which can be conveniently put inside the car. So, I got them installed in my car back home in India”. This allowed her to drive but she understood the need for a “proper licence”.

So, she went to the RTO in Maharashtra, waiting inside the car for the examiner. “I cleared it (the test) and they asked me to come inside for getting a picture taken and signing documents. But the moment I got out of the car, they jumped and said, ‘No, no, no, you can’t drive.’ I said I was driving and you just cleared it.”

She then reached the central RTO, after which it took her about 19 months to get her vehicle registered. Her next obstacle was to get an official rally licence from the Federation Motor Sports Club of India FMSCI, who were concerned that, “If there was a need for evacuation how would I get out? I then had to dig up at least 5-7 cases where the rally driver had gone unconscious. An unconscious person is as good as a paralysed person. It took another four months before I was given an okay. I could do the Raid-de-Himalaya and other road journeys.”

While raising awareness, her experience tells us how special needs are still treated in India. And from those we met at RML hospital, we understand how difficult it becomes to procure an official document which could change someone’s life.

This makes us think about the Transgender Bill 2019, which while passed by the Rajya Sabha has some strong opposition from the transgender community. One of the reasons to criticise it is the provision of Certificate of Identity for a trans person.

In this case, like in the case of Certificates of Disaability, it allows the person access to education opportunities along with other social welfare schemes.

The Bill says an applicant would have to approach the District Magistrate for a Certificate of Identity, indicating the gender as ‘transgender’. Furthermore, “A revised certificate may be obtained only if the individual undergoes surgery to change their gender either as a male or a female,” the Bill states.

It doesn’t just mean running from pillar to post perhaps for months to obtain such a document, but would be physically and mentally invasive.