The District Disability Welfare Office organised a camp for the differently-abled at the Government Kannada School in DJ Halli on August 11th and 12th, to ensure immediate needs of differently-abled people at DJ Halli are met. The camp allowed the differently-abled to undergo medical check-ups, and apply for disability certificates, disability pension and aid devices.
The first patient to come into the camp was an old lady, Vijaya, with some form of mental illness, who came in as early 8 30 am on Aug 11th, despite the disability camp being scheduled to start only at 10 am. She was accompanied by her granddaughter, a middle-school student of the same school where the camp was being held. With the screening beginning more than an hour late, as most of the doctors arrived much later than expected, the girl would take a break from her classes every once in a while, to check on her grandmother, who waiting to meet the doctors and hoping to apply for her disability certificate and her disability pension.
Disability camp as a follow up to survey
In all, more than 300 people turned up on the 1st day of the camp, with their disabilities spanning visual, auditory, orthopedic and mental deficiencies. This camp was a follow up to the disability survey conducted in DJ Halli across two weeks in the month of June 2014, jointly by the District Disability Welfare Office (DDWO) and the Movement for Basic Rights, a collective of DJ Halli residents and volunteers from other parts of Bangalore.
According to the estimated incidence of disability (~ 4 -5%), for a combined population of one lakh across wards 47, 48 and some portions of ward 61, it was expected that at least 4,000 differently-abled persons will be enlisted. As against that, only 733 differently-abled people were enlisted on the conclusion of the survey. The limited number of surveyors available resulted in many of the areas not being surveyed, thus resulting in the number of differently-abled people enumerated being significantly smaller than expected.
High incidence of disability
The increased focus on the social indicators of DJ Halli in the aftermath of the death of 6-year old Meghala, in July 2013 due to malnutrition, revealed a high incidence of physical disability in the area, with large numbers of people either not receiving the monthly disability pension that they were eligible for, or even the disability certificate that would make them eligible for the same. Incidentally, Meghala’s mother is also severely visually-impaired.
One of the main objectives of the camp was to facilitate the easier application for the disability certificate, by ensuring the presence of doctors for screening patients’ extent of disability and working in collaboration with the officials of the DDWO to ensure speedy processing of the application. The disability certificate is necessary for people with disabilities (PWD) to access any form of disability benefits like pensions, loans, aid equipment, bus/train passes etc.
At the end of the day, almost 120 new applications for disability certificates were received and processed at the camp, with orthopedic and mental-retardation related disability applications being the most common. The alternate perspective – the evaluation for visual and ENT disability was so dysfunctional that most of the patients were not able to apply for their disability certificates. More on that later though.
Shahida’s story – Just one among many
Shahida Banu, a mother of three, had come to camp to apply for new disability certificates for her two younger kids, 11 year-old Rayan and 5 year-old Salma. Salma says, “Rayan used to study well at school till he fell down from the first floor of the building where we live. Since then, his interest level in studies has decreased significantly and he has also been getting frequent headaches. He was soon referred to NIMHANS where he was diagnosed with mental retardation”. His sister Salma, Shahida Banu says, has had various developmental delays, with her not talking or walking till she was three years old, and that even now these are not comparable to other children of her age. Shahida, whose husband sells vegetables at the City Market for a living, was finally able to submit the applications for her children’s disability certificates at the fag end of the day, after having waited for more than 6 hours.
All that was wrong about the camp…
Indifferent and dysfunctional doctors – the camp’s weakest links
11 = 9 = 4. Sometimes numbers defy logic.
The DDWO was informed that 11 government doctors had confirmed their presence for the camp. Sometime before the camp started, the number dwindled down to 9. But finally only 4 turned up, 2 for orthopedics, one for ophthalmology and one for ENT. An ophthalmic assistant and a psychologist made up the rest of the team. And those who had turned up were under-prepared, to put it mildly.
The ENT doctor was not accompanied by an audiologist. Audiologists bring the audiometry equipment along to generate the audiometric reports, which in turn are used by the ENT doctor to issue disability certificates. In this case, with no audiologist being present, the ENT doctor conveniently referred everybody but one, to NIMHANS or other similarly big hospitals for audiometric tests, thus rendering their several hours long wait at the camp completely useless.
Uma, a woman with hearing and speech impairment, was referred to NIMHANS for her audiometry tests, but she did not leave the camp till the fag end of the day, in the vain hope that she would be able to apply for her disability certificate. No such thing happened though. The lone lucky person who did manage to apply for the disability certificate was forced to bring the audiometry test results from home.
The ophthalmologist and the assistant had brought along reading charts with only English and Kannada words and alphabets, and were wondering why many of the patients could not read anything. A little more attention to detail would have made them realise that a significant population of DJ Halli knew only Urdu. There are specific charts with sign language for those who are illiterate or unfamiliar with languages. This is a necessary part of the ophthalmologists’ kit, especially when they are visiting an urban slum. Rather than trying to work with the available resources, they kept complaining that they would not be able to make do with the facilities at the camp.
Two severely visually-impaired kids, Mohammad Ali, 20 years old, and Muneer, 5 years old, were sent back without submitting their disability certificate applications because the ophthalmologist insisted on knowing why they were blind and wanted to see previous medical reports which the parents were unable to produce. This was not an isolated instance, and such incidents put the competence of the entire department in question.
And yes, the ophthalmology team had come over to evaluate people’s visual ability, without a torch, forcing the volunteers to run around searching for one.
A grand total of three visually-impaired people were able to apply for their disability certificates.
One of the orthopedic doctors was no better, when all of a sudden, he just got up and walked away from the room, citing the lack of enough light as a reason to stop evaluating the patients already queued up in front of his desk. Several patients and volunteers complained about the condescending and apathetic attitude of many of the doctors, especially after the delayed arrival of the doctors had made everybody wait for much longer than necessary. Some of the patients were clearly unhappy with the delay, faced with the unwelcome prospect of losing a part or all of their day’s wages. One woman, in fact, was waiting to get done with the check-up, having to get back home to take care of the arrangements for a funeral in her family.
Finally, a little over two hours after they arrived at the camp, some of the doctors had packed up, ready to leave, despite being fully aware that the camp was scheduled to remain open till 5 pm. Intervention from the DDWO, Bangalore Urban, Mr. Mohan, prolonged their presence marginally, ensuring a few more patients got seen, but in the end none of the doctors stayed beyond 3.30 pm.
The few bright spots
The psychologist, on the other hand, was well prepared and thorough with her evaluation, working through the entire day without even breaking for lunch and eventually left only when the day’s proceedings were wound up. More than 35 people with mental retardation were able to apply for their disability certificates.
In contrast with the attitude of some of the doctors, the politeness with which the staff members from the Artificial Limbs Manufacturing Corporation of India (ALIMCO) reviewed applications for wheelchairs and took down measurements for prosthetic limbs was heartening to see.
A community supported effort
Neither the disability survey, nor the camp would have materialised, but for the support and participation from the local community. The list of areas to be surveyed were decided through community discussions, keeping in mind the limited number of DDWO surveyors available, and they also ensured the availability of a community volunteer to accompany the DDWO surveyors for the actual survey. Thousands of pamphlets were distributed in the area to inform the general public about the camp and many volunteers were present for the entire duration of the camp to, assist people with any questions they had and to guide them to their respective evaluation rooms.
Those who already possessed disability certificates and only needed to apply for disability pension were able to do so at counters managed by volunteers of the Movement for Basic Rights, who helped fill out the necessary applications forms.
It also has to be noted that the DDWO provided for the pamphlets that were distributed and the banners that were put up in strategic locations around the area.
A broken process – What needs to change?
The DDWO had little authority over the doctors though. As a result, the DDWO had to request the doctors every time anything was required. This clearly illustrates the need for a dedicated set of doctors and staff coming under the DDWO’s authority, for conducting such camps.
The doctors participating in these camps need to be adequately prepared and equipped. A lot of people were referred to higher hospitals, defeating the purpose of holding a camp in the area to ensure that services could be accessed easily by people with disabilities from poor economic backgrounds.
While some patients were given hand-written notes in slips of paper that merely indicated the hospital they were being referred to, some others were simply verbally referred, thus greatly increasing the chances of them having to run around the hospital to get their work done. Referral slips clearly indicating when and where (which department etc) the referred patients need to go for their screening should be available with the doctors at all times.
The camp did not cover other disabilities like neurological/cured leprosy, mental illness etc. It would have been good to have a screening section so that people could have been registered and contact details taken so that they could have been referred to the respective departments.
The DDWO did not intimate that the disability certificate booklets had to be signed by the person with disability thus resulting in the booklets being returned to the DDWO without the board’s attestation. Many patients who had came back on the next day to receive the booklets as they had been promised earlier, had to return home empty-handed, after signing them.
The DDWO should have a protocol for conducting camps to avoid them becoming mere tokenism. This protocol should be devised in consultation with the community to ensure their actual needs are addressed with minimum inconvenience caused to them.
The old lady Vijaya was finally able to meet the psychologist on hand to evaluate patients with mental retardation and mental illnesses. However, she was unable to submit her application for a disability certificate, as the psychologist opined that hers was a curable form of mental illness caused by her age, and not necessarily a form of permanent mental retardation. She was referred to a hospital for a more thorough check-up of the physical and mental problems that she was undergoing. The presence of a psychiatrist might have just saved Vijaya a lot of trouble.
Author’s note: This article was written by Karthik Ranganathan, with inputs from Dr. Sylvia, Siddharth, Gee and Chetana, fellow volunteers with the Movement for Basic Rights