Vulnerable Victims Of The Pandemic: Implications For The Elderly and The Disabled

Disclaimer: Research by the Impact and Policy Research Institute (IMPRI) Team

Co-Authors: Dr Arjun Kumar, Prof. Manish Priyadarshi, Dr Simi Mehta, Prof. Balwant Singh Mehta, Prof. I C Awasthi, Prof. Soumyadip Chattopadhyay, Prof. Shipra Maitra, Dr Indu Prakash Singh, Raj Kumar, Ritika Gupta, Anshula Mehta, Dr Kahkashan Kamaal, Baikunth Roy, Dr Dolly Pal, Puja Kumari

Background

The coronavirus disease (COVID-19) has spread across the world emerging as a pandemic, traumatizing the globe. According to the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC), older individuals and those with pre-existing medical conditions such as asthma, heart disease or diabetes, seem to be at a higher risk of becoming severely ill from COVID-19. From several overseas studies, it may be estimated that those who contract COVID-19 and are 65 years and older have a 4% mortality rate, 75 years and older have an 8% mortality rate, and 85 years and older have a 15% mortality rate; the average mortality rate being around 2%.

In his speech on April 14, 2020—wherein a 19-day extension of the nationwide lockdown was announced—PM Narendra Modi urged the citizens to give “extra care” to the elderly, especially those with chronic diseases, in tandem with “social distancing” and self-isolation.

The elderly (defined as 60 years or above) population in India is estimated to be around 10.4 crores, according to the 2011 Census. Similarly, according to the National Sample Survey (NSS) 76^th Round report, “Persons with Disabilities in India”, the disabled population in India is estimated to be 2.6 crores. It takes into consideration the 21 types of disabilities included in the Rights of Persons with Disabilities Act, 2016. The elderly and Persons with Disabilities (PwD) are some of the most vulnerable sections of society and constitute about one-tenth of the total population of the country.

Including the disabled, out of the total older population, 2.1 crores belong to the poorest households having a monthly household income of less than Rs 2900. These segments are some of the worst-hit in terms of accessibility, availability and affordability of basic life-saving services, and in being affected by depression and anxiety. It is now evident that this virus infects people especially with a weak immune system, like the elderly. This calls for an increased and immediate focus on accessible and emergency healthcare, with an emphasis on feasibly practising hygiene and distancing. This is vital for the susceptible segments of our population that require more and specialized medical attention.

We have had an overdose of COVID-19 discourses from the media, and it has been reiterated that it is important to take precautions and isolate these vulnerable sections of society to prevent the country from a public health catastrophe, as being manifested in the US and Italy. In this scenario, the WHO has published “Disability considerations during the COVID-19 outbreak”, highlighting the greater significance of the impact of COVID-19 on the disabled population, which can be mitigated through appropriate action and protective measures by key stakeholders. Similarly, a statement from the WHO underlines the increased risk to the elderly from COVID-19, and pushes for a collective approach to supporting and protecting older people living alone, with special attention to be given to those who provide care for them.

The sudden announcement of the lockdown—now extended—in the country has led to panic and socio-economic and health emergencies, wherein the PwD and the elderly are among the worst affected. According to the United Nations (UN), unless the governments and communities take action, this section will continue to face problems during the COVID-19 pandemic.

The Disabled and Elderly in India: State of Affairs

The “Elderly in India” Report (2016) by the Ministry of Statistics and Programme Implementation (MoSPI) presents some characteristics of the older population based on data from the 2011 Census and the 2013 Sample Registration System (SRS) report. Both the share and size of the elderly population was found to be increasing over time. From 5.6% in 1961 the proportion increased to 8.6% in 2011. For males, it was marginally lower at 8.2%, while for females it was 9.0%. 71% of the elderly population was reported to reside in rural areas and 29% in urban areas. The most common disability among the aged persons was locomotor disability and visual disability, with around 5% of the 60+ population having a physical disability.

There are 21 types of disabilities identified under the Rights of Persons with Disabilities Act, 2016 (PwD Act, 2016). These fall under the categories of locomotor disability, visual disability, hearing disability, speech and language disability, mental retardation/intellectual disability, mental illness, and other disabilities.

The NSS 76^th Round report based on this classification finds a prevalence of disability (percentage of PwD in the population) of 2.2% in India, with a higher prevalence in rural areas (2.3%) than in urban areas (2.0%), and higher among males (2.4%) than among females (1.9%). According to the report, only 28% of the total disabled people have Disability Certificates (which is about only 73 lakh out of 2.6 crore disabled people). Only 21.8% of the individuals receive government aid, 1.8% receive aid from organizations other than the government, and 76.4% do not receive any aid.

The policy decision of a lockdown is not sensitive to the population of the elderly and PwD in its entirety. According to the two reports, around 4% PwD live alone[1], and 14% of the elderly population is dependent on others (caregivers)[2]. Frequent visits to hospitals and rehabilitation centres are often a requirement. The caregivers—although immensely vital—may be hesitant to provide their services in the current scenario due to the increased risk of infection.

When practising a seemingly basic habit of handwashing might be contingent upon the ability to access and use a facility to do so, following other safety guidelines would be similarly conditional for the segments of the elderly and disabled that are further at risk in isolation. According to the Ministry of Health and Family Welfare (MoHFW), about 63% of the coronavirus related deaths are in the age cohort of 60+.

Lack of accessible information and its dissemination, a faulty built-in environment and negative social attitudes towards PwD are matters of grave concern, particularly as these times put their lives and livelihood at serious risk. Persons with visual disabilities rely highly on the sense of touch (reading Braille, providing inputs on electronic devices, using canes, etc.) for mobility and work, thus increasing their risk of getting infected. Many of the quarantine centres don’t have PwD-/elderly-friendly infrastructure, like lifts or disabled-friendly toilets. This needs to be taken cognizance of and addressed swiftly, especially in a time when the Prime Minister emphasises on the need to take care of the elderly as part of the agenda for tackling the COVID-19 crisis.

Government Policies, Acts and the Welfare Framework

The Nodal Union Ministry responsible for senior citizens and PwD is the Ministry for Social Justice and Empowerment (MoSJE). For providing more effective provisions for the elderly, the Maintenance and Welfare of Parents and Senior Citizens Act, 2007 was initiated. Further, the National Policy for Senior Citizens, 2011 was aimed at the welfare of older persons, and underlined the value of an “age-integrated society”. It laid out eight areas of intervention: income security in old age, healthcare, safety and security, housing, productive ageing, welfare, multi-generational bonding, and media. Within the MoSJE, the Senior Citizen Division addresses the requirements of the elderly.

The Integrated Programme for Senior Citizens is a significant Central Sector Scheme here. Its main objective is to “improve the quality of life of Senior Citizens by providing basic amenities like shelter, food, medical care and entertainment opportunities and by encouraging productive and active ageing through providing support for capacity building of State/UT Governments/Non-Governmental Organizations (NGOs)/Panchayati Raj Institutions (PRIs)/local bodies and the community at large.”

The Department for Empowerment of Persons with Disabilities (Divyangjan) (DEPwD) under the MoSJE caters to the needs of the disabled communities. It administers three Acts: The Rights of Persons with Disabilities Act, 2016; The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999; and the Rehabilitation Council of India Act, 1992. The National Policy for Persons with Disabilities was released by MoSJE in 2006. It focused on the prevention of disabilities, rehabilitation measures (physical strategies, education, and economic rehabilitation), women and children with disabilities, a barrier-free environment, social security and other crucial aspects.

The major schemes of the Department include Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances (ADIP); Scheme for Implementation of Persons with Disabilities Act (SIPDA); Deendayal Disabled Rehabilitation Scheme (DDRS); Disability Rehabilitation Centres (DDRC); and various fellowships, scholarships and skill training for PwD. In 2018–19, 1.8 lakh beneficiaries availed the benefits of ADIP when the actual budget estimate stood at ₹216 crores. In FY 2020-21, it has been allocated a fund of  ₹230 crores. However, it will pass the litmus test only if the resources are channelled into implementation, beyond announcements.

National Social Assistance Program (NSAP) and Other Government Initiatives

The National Social Assistance Program (NSAP) came into effect from August 15, 1995. It introduced assistance for the poor and aims at ensuring a minimum national standard for social assistance, in addition to the benefits that states are currently providing or might provide in the future. It has five sub-schemes as its components: Indira Gandhi National Old Age Pension Scheme (IGNOAPS); Indira Gandhi National Widow Pension Scheme (IGNWPS); Indira Gandhi National Disability Pension Scheme (IGNDPS); National Family Benefit Scheme (NFBS); and Annapurna. Under this program, around four crores beneficiaries have been digitized, in all—including 3.3 crores under central schemes and around 70 lakh beneficiaries under state schemes.

States are also providing financial assistance for PwD and the elderly under various schemes. The following tables show the existing State Government disability and old-age pension schemes and financial assistance in India:

In light of the coronavirus crisis, it was announced that the Centre will provide three months of pension in advance to poor senior citizens, differently-abled and widows under its National Social Assistance Program (NSAP). Further, under the Pradhan Mantri Garib Kalyan Yojana (PMGKY), the Finance Minister announced an ex-gratia of Rs 1,000 over three months in two installments for poor senior citizens, disabled communities and widows. The National Platform for the Rights of the Disabled (NPRD) and various groups and experts have expressed dismay as the ex-gratia amount is “very meagre” and “grossly inadequate”.

Central government had also issued instructions to all states and union territories to ensure that caregivers of PwD were able to reach them during the three-week lockdown (now extended). In March, the Ministry of Social Justice and Empowerment issued instructions to implementing agencies for senior citizens such as Old Age Homes, Regional Resource Training Centres and Rehabilitation Centres, to provide the elderly with special medical attention and care.

The DEPwD or Divangjan has issued “Comprehensive Disability Inclusive Guidelines”. The Ministry of Health and Family Welfare has also published a Health Advisory for Elderly Population of India during COVID-19.

To mitigate the effects of the lockdown, various state governments have focused on the financial assistance being given to the PwD and pensions to the poor elderly population. For instance, Bihar state government is providing three-month advance pension through Direct Benefit Transfer to pension holders under the Divyang scheme, among others. The Delhi government has doubled the pension amount for widows, differently-abled and the elderly to ₹5000 per month.

Elderly, PwD and Work Participation in the Times of COVID-19

As per the latest information available from the Periodic Labour Force Survey (PLFS) 2017–18, almost one out of three elderly people are engaged in some economic activities for their survival (29%). While the work participation rate among poorest 40% of households is slightly higher, indicating more vulnerability among those elderly people who belong to poor households. Almost three-fourth of vulnerable elderly people are working in low productivity and subsistence agriculture (73%) sector, followed by construction (7.4%), and hotel, trade and restaurant (6.8%). It means that almost 87% of the elderly population belonging to the bottom 40% of the households in the economic ladder are vulnerable and in the worst conditions; thereby, necessitating urgent assistance, particularly in the absence of any alternative livelihood opportunities.

Source: PLFS, 2017–18 and NSS, 2018; computed by Authors.

On the other hand, according to the NSS Survey, 2018, only 23% of disabled adults are working, while just 4.2% are unemployed. This indicate that over three-fourth (77%) of the disabled are dependent upon other family members and government welfare schemes for their livelihood and survival. Out of those employed, the majority are involved in the less productive agriculture sector, low-income self-employment and casual work. So, one can say, that the majority of disabled are those employed in informal or low-paid activities, and are likely to be heavily affected by the lockdown.

The Way Forward

With mandatory distancing advised for senior citizens, they are rapidly experiencing a plethora of changes and an exacerbation of pre-existing troubles—loneliness, restricted mobility, and lack of financial security, to name a few. The India Ageing Report-2017 by the United Nations Population Fund (UNFPA) estimated that by 2030 around 12.5% of our population will be 60 years and older, and by 2050, one-fifth of India’s population will be aged. It further highlighted their multiple vulnerabilities and shined light on the status of elderly women as well, who are further at risk due to a longer life expectancy and the absence of a proper social security network. Knowing this, and witnessing the current crisis, it is only prudent to provide opportune increased support to the vulnerable elderly and disabled population.

Further, the government urgently needs to set aside a corpus of its resources for the disability sector to provide them immediate relief. Any plan initiated should be equally inclusive for the women and transgenders with disabilities and old age. Organisations of Persons with Disabilities (OPDs) and disability rights or advocacy groups should be involved to harness their expertise and to play important roles in raising awareness and disseminating information among the PwD, in addition to advocating for disability-inclusive responses to the COVID-19 emergency.

Coordinated efforts of all stakeholders, governments, communities and civil society organizations are extremely crucial at this juncture, with active support from the citizenry. The affirmative actions to decontaminate the disabled communities from the perils of the coronavirus can have a far-reaching impact. These suggestions have been written keeping in mind the steps to be taken immediately during the continued lockdown period.

The NSAP has a criteria of 80% and above disability to be eligible for the benefits under the scheme. According to the NSAP dashboard, there are 2.09 crore pensioners under IGNOAPS[3], and 17.3 lakh pensioners under IGNDPS[4] for 2019–20. During these tough times, it is advisable to relax the eligibility criteria and expand the reach, and provide more than the ‘meagre sums’—as suggested in the measures announced under PMGKY—so individuals are, at the least, able to fulfill their basic monthly needs. As the number of individuals in need increases due to the fallback in livelihood, due to the pandemic and the lockdown, it is necessary to take these schemes further by increasing the scope of coverage and providing assistance to a greater number of beneficiaries.

The budget allocation for pension to the poor elderly and disabled populations has remained static or increased only marginally. During this pandemic crisis, the 2020–21 budget for NSAP should be appropriately increased—ideally doubled—to match a corresponding increase in the targeted number of beneficiaries.

The access to welfare schemes for disabled and elderly should be streamlined to eliminate mental agony, physical struggle and delays in obtaining financial assistance. Red-tapism and corruption should be checked. The government should also strengthen other financial inclusion and social transformation schemes like “JAM-Trinity”, and make it more convenient to use technology for convenience and not the other way around. Cash assistance must be provided along with special provisions under the Public Distribution Scheme (PDS) for the PwD and the elderly on an urgent basis.

To combat the pandemic, awareness and information dissemination are of utmost importance. Users and reporting entities of print, electronic and social media should be instructed on and sensitized about the special needs of the elderly and PwD. Video conferencing, tele-medicine and telephonic conversation can be adopted by doctors to contact their disabled patients. An online information and grievance portal should be devised, inclusive of all types of disabilities and challenges specific to old age and related ailments, with special psychological counselling services. It should be centred on accessibility and ease of use, with simple input requirements.

This is imperative to minimize the need for human intervention and dependence and promote self-reliance. Information can and should be disseminated with disability- and elderly-inclusive practices of publicity (using sign language, voice assistance, minimalistic interface and others). Information should also be made accessible in the regional languages, and the information should be disseminated through the coordinated efforts of the government, NGOs and civil societies even after the lockdown is lifted.

Governments should ensure accessible study material and lesson plans for disabled students who do not have access to the internet. Without government support, parents or caregivers may struggle to provide the full range of services their children may receive in schools. Access to the aids, devices and necessary mobility and communication equipment to the disabled and elderly during the lockdown should also be ensured.

The bureaucracy in-charge of the welfare of the PwD must be sensitized and streamlined. Those states that do not yet have a state commissioner for PwD or the chief commissioner for PwD as per the DEPwD guidelines, must instate one urgently. In fact, their appointment must precede with a background check on their understanding of the sensitivity, support, knowledge, training and motivation of the challenges and needs of the PwDs. Appointment of specialists/experts possessing these traits can also be explored for this position.

The caregivers of these vulnerable sections must be sensitized and trained, and it must be ensured that they do not face any troubles in reaching out to their dependent. For this purpose, passes should be arranged; provisioning of e-pass for this purpose should be incorporated as one of the options. Precautionary measures and increased financial assistance should be provided to caregivers. Residents’ Welfare Associations can volunteer to carry out tasks such as wellness checks on the elderly and people with disabilities if there is a need for the same. Communities need to come together and extend their support in combating loneliness in isolation and assist in a linkage to Information and Communications Technology (ICT), with hand-holding.

To conclude, in the prevailing health exigency, the elderly and PwDs face compounded challenges. It is the responsibility of the governments at all levels to work in tandem with each other and with civil society organizations to provide increased emergency funding for programs that allow senior citizens and PwDs to remain healthy, anxiety-free and safe at home. We believe that through concerted action, India could set an example before the world and successfully contain this humanitarian crisis.

[1] http://www.mospi.gov.in/sites/default/files/publication_reports/Report_583_Final_0.pdf

[2] http://mospi.nic.in/sites/default/files/publication_reports/ElderlyinIndia_2016.pdf

[3] Indira Gandhi National Old Age Pension Scheme

[4] Indira Gandhi National Disability Pension Scheme