Barring a few, most states and UTs ignored the guidelines to help persons with disabilities during the lockdown

Barring a few, most states and UTs ignored the guidelines to help persons with disabilities during the lockdown

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published Published on May 22, 2020   modified Modified on May 23, 2020


A recent survey conducted by National Centre for Promotion of Employment for Disabled People (NCPEDP) -- a Delhi-based non-profit organisation -- shows how persons with disabilities in the country were disproportionately affected by the COVID–19 crisis.

The report by NCPEDP has observed that persons with disabilities, particularly those from economically deprived sections, went through severe hardship during the lockdown. Without sufficient access to food or money, many of them faced hunger and starvation. Caregivers were unable (and sometimes unwillingly) to reach those who needed their critical support. A large proportion of persons with disabilities could not access vital medical assistance and peer support systems during the lockdown.

The survey by NCPEDP indicates that the state governments and Union Territories (UTs) did not adhere to the ‘Comprehensive Disability Inclusive Guidelines’, which was issued by the Department of Empowerment of Persons with Disabilities (DEPwD) under the Ministry of Social Justice and Empowerment to them (on 27th March, 2020) for the protection and safety of persons with disabilities (divyangjan) in the light of pandemic.

Had the ‘Comprehensive Disability Inclusive Guidelines’ been effectively implemented across the nation, many of the issues faced by persons with disabilities during the lockdown could have been addressed, according to the report. Among other things, the 'Comprehensive Disability Inclusive Guidelines' mention that "persons with disabilities should be given access to essential food, water, medicine, and, to the extent possible, such items should be delivered at their residence or place where they have been quarantined."

It may be noted that persons with disabilities in the country outnumber the combined populations of Ireland, New Zealand, Austria, Uruguay and Kuwait. Therefore, a concerted effort is needed on the part of the Union and state governments to provide relief to the differently-abled, says Arman Ali, executive director, NCPEDP, in his foreword to the report.

According to the NCPEDP report, states like Tamil Nadu, Kerala, Nagaland and Assam did a commendable job for taking care of persons with disabilities.

The main findings of the document entitled Locked Down and Left Behind: A Report on the Status of Persons with Disabilities in India during the COVID–19 Crisis (released on 21st May, 2020), which has been produced by National Centre for Promotion of Employment for Disabled People (NCPEDP), are as follows:

• The survey has revealed that more than 73 percent of 1,067 persons with disabilities interviewed were facing particular challenges as a result of the lockdown. Out of those going through particular challenges, 57 percent confronted financial crisis, 13 percent faced challenges in accessing rations, whereas 9 percent experienced obstacles in accessing healthcare and medical aid.

• Out of 201 disabled persons (chosen out of 1,067 respondents on the basis of a stratified random sampling) who gave more detailed information (to the surveyors) on the challenges faced by them, almost 48 percent of the respondents (i.e. 96 persons with disabilities out of the total sample 201) said that they had no access to any government helpline. Around 7 percent were not aware if there is any helpline in their state, let alone any helpline for disabled persons. Only 45 percent (i.e. 91 persons) had access to government helpline. Among other things, the 'Comprehensive Disability Inclusive Guidelines' say that "24X7 Helpline Number at state level be set up exclusively for divyangjan with facilities of sign language interpretation and video calling."

• The survey has found that access to food and groceries was particularly difficult for persons with mobility issues. Nearly 67 percent of respondents (i.e. 134 disabled persons out of the total sample 201) had no access to doorstep delivery of essentials by the government. Only 22 percent (i.e. 44 disabled persons out of 201) confirmed that they had access to delivery of essentials.

• Almost 63 percent of persons with disability, (i.e. 127 disabled persons out of the total sample 201) did not receive the Union government and state government pension money. The subsample respondents revealed that states, such as Kerala, Bihar, Rajasthan and Uttar Pradesh disbursed pension money, but so far none have received the central government pension money of sum Rs. 1,000. In view of the COVID–19 crisis, the Centre announced that it will provide three months’ pension in advance to persons with disabilities under its National Social Assistance Programme (NSAP). It also announced an ex gratia of Rs. 1,000 over three months in two instalments for them.

• Healthcare workers were not equipped to deal with disabled people. Persons with disabilities with conditions, such as diabetes faced problems getting their blood or urine tests done during lockdown since pathology labs were not open, and home collection of blood samples had stopped. Those taking lithium for mental health treatment had to stop blood testing, to control for dosage. The drop in supply of blood in blood banks by almost 50 percent made blood transfusion a major challenge. This had put people with thalassemia at great risk. People with spinal cord injuries faced a huge shortage of medical kits as well as medical services, such as fixing catheters. People on prescription pain killers had difficulties in accessing essential medicines. Persons with severe disabilities who need diapers, catheters, urine bags, disposable sheets, bandages, cotton, antibiotics, medicines, etc. were unable to procure these either due to lack of funds, shortage of these items in medical stores, or owing to their inability to physically get them or procure them through someone's help.
 
• The near total lockdown meant that caregivers were overnight not able to be with the persons with disabilities who depend on them. Even in cases where the caregiver is willing to attend duties (despite their own risk of getting infected), the lack of transport options made it impossible to help persons with disabilities. Assistive devices could play a critical role in the life and functioning of a person with disability. The lockdown, with its consequential restriction on services and purchases, had put some persons with disabilities at risk. Persons with disabilities who depend on social and peer support groups and systems, reading rooms, listening circles, cafes and friendship groups were suddenly left isolated and alone, without lifesaving social contacts.

• Instances of abuse and attacks on persons with disabilities tend to go up in times of great stress as they are often not in a position to adequately defend themselves. Abandonment of family members with disabilities is also a grave challenge, says the NCPEDP report.

• Pandemics, such as the current COVID-19, fundamentally disrupt human existence, and affect persons with disability disproportionately. Persons with pre-existing mental health problems and psychosocial disabilities are particularly disadvantaged during the lockdowns. For persons with mental illness or epilepsy, reduced access to medication can lead to relapse of symptoms, as can the compounded stress.

• Women with disabilities face the additional burden of intersectional discrimination. They face layers of prejudice that stem from gender, poverty, lack of education, and social prejudice. Often denied sexual and reproductive rights, they are at greater risk of sexual assault and violence. In fact, incidents of domestic violence appear to be rising in the country during the COVID-19 lockdown, observes the NCPEDP report.

• Children with disabilities are perhaps the most vulnerable. For many, their almost total dependence on parents or other caregivers, puts them also at the receiving end of any distress suffered by these guardians. The lockdown has put them at an unfair disadvantage in the arena of mainstream education. Children with disabilities are especially hard to serve through distance programmes. They are among those most dependent on face-to-face services -- including health, education and protection -- which have been suspended as part of physical distancing and lockdown measures. They are least likely to benefit from distance learning solutions.

GOOD PRACTICES OF SOME STATE GOVERNMENTS

Kerala

The state of Kerala has established common kitchens where cooked food is served. Dry rations are provided to those who cannot reach these common kitchens. There were no complaints about access to food in the state.

Kerala has not only released payments but also made advance payments to help disabled persons cope with the COVID-19 lockdown. The state has also ensured that students with disabilities receive Rs. 5000 ex gratia payment.

The state has ensured that local self-governments are involved in taking special care of persons with disabilities.

Kerala has also been very active in ensuring the availability of information in accessible formats, such as in Braille and audible tapes for persons with visual impairment.

Tamil Nadu

The state of Tamil Nadu has launched a helpline for persons with disabilities catering to people from state to district level. Indian sign language interpreters are also available to cater to deaf and hard of hearing persons.

The Tamil Nadu Disability Commissioner has issued instructions for specific timings or doorstep delivery of goods from PDS ration shops.

Doorstep medical service such as fixing/ changing catheters has been enabled by the Tamil Nadu State Disability Commissioner. Doorstep personal physical therapy has also been enabled.

The Commissionerate for Welfare of the Differently-Abled in Chennai has instructed the Tamil Nadu State Physiotherapy Council to provide e-physiotherapy sessions for disabled people in the state.

Caregiver passes and travel passes are being implemented by the state government of Tamil Nadu.

Assam

The State Disability Commissioner Office in Assam is responding to issues promptly. In Assam, a list of Deputy Commissioners and Additional Disability Commissioners has been shared with Organizations of Persons with Disabilities (DPOs) in order to ease the process of providing relief. On instructions of the State Disability Commissioner, the Assam State District Management Authority came out with a Standard Operating Procedure (SOP) and logistic support is being provided to caregivers. The Assam State Home Department has also been very proactive in issuance of passes to persons with disabilities.

In Assam, under the directive of the State Disability Commissioner, the State Disaster Management Authority (SDMA) has created videos with information on COVID-19 with Indian sign language interpretation and subtitles. Although no helpline has been set up, a list of district level officials designated to deal with concerns of persons with disabilities has been shared by the office of the State Disability Commissioner (though not very widely).

Nagaland

The state government of Nagaland has been responsive to the needs of the differently-abled persons and has coordinated positively with the Office of the Disability Commissioner. ‘Guidelines on COVID-19 measures in respect of Persons with Disabilities’ were notified by the Home Department. The Disability Commissioner has been designated State Nodal Authority and overall in charge in matters related to persons with disabilities, and the District Welfare Officers have been designated as the district nodal officers. Separate accessible quarantine facilities have been set up for persons with disabilities in some districts. Steps were immediately taken to make the State COVID-19 Dashboard accessible after the Disability Commissioner wrote to the Information Technology Department.

The Government of Nagaland conducts daily briefing with the help of Indian sign language interpretation. It brings out a daily video briefing on COVID-19 status in the state, which includes Indian sign language interpretation. State advisories and information on COVID-19 are being brought out in local dialect and Indian sign language by the office of the Nagaland Disability Commissioner.

In Nagaland, a helpline for people with disabilities was set up on the initiative of Disability Commissioner. A separate number for WhatsApp video calls was also set up for persons who are deaf/ hard of hearing.

The office of Disability Commissioner in Nagaland is ensuring that essential food supplies/ dry rations are delivered to the doorsteps of persons with disabilities in need in coordination with District Administrations, partner CSOs and local churches.

More about the survey

The NCPEDP report is based on a combination of primary and secondary research. Information on the situation of disabled in the country during the lockdown is based on the results of a survey of 1,067 (roughly 73 percent male and 27 percent female) persons with disabilities through online questionnaires. Media reports were also consulted so as to capture ground realities, apart from inputs from data collated from NCPEDP’s COVID–19 helpline.

Government response (both national and state governments) in addressing issues and concerns was analysed on the basis of a desk review and doctrinal study of the relevant statutes, orders, guidelines and notifications. The gaps in implementation is presented in the report based on data collated from the NCPEDP survey as well as its dedicated helpline.

Three online Focus Group Discussions (FGDs) were held in April 2020 with twenty-three participants (leading disability activists from various parts of the country) who contributed to the understanding of gaps, good practices, as well as recommendations for future action.


References:

Locked Down and Left Behind: A Report on the Status of Persons with Disabilities in India during the COVID–19 Crisis, published by National Centre for Promotion of Employment for Disabled People (NCPEDP), released on 21st May, 2020, please click here to access

Persons with disability face severe challenges in lockdown, says report -Bindu Shajan Perappadan, The Hindu, 21 May, 2020, please click here to access

Lockdown and Persons with Disabilities: Survey recommends enforcing disability inclusive guidelines across India, The Indian Express, 21 May, 2020, please click here to read more

Disability Rises in Urban India: Census 2011, News alert by Inclusive Media for Change dated 29th December, 2013, please click here to read more

 

Image Courtesy: Locked Down and Left Behind: A Report on the Status of Persons with Disabilities in India during the COVID–19 Crisis, published by National Centre for Promotion of Employment for Disabled People (NCPEDP)



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