15 Apr How COVID-19 quarantine is affecting disabled people in Uzbekistan?
Photo by Evgeniya Grande titled ‘Precipice’. ‘This is the building of the Ministry of Healthcare of Uzbekistan, and this is a person in need of social protection. There is a gap between them … or rather a staircase and a wheelchair … A symbol …”
Is coronavirus information accessible to disabled people and is their social protection adequate? Who suffers most from self-isolation and how to help them? I wrote an op-ed at Gazeta.uz about the challenges faced by children and adults with disabilities, as well as their family members during the quarantine period, and about the possible consequences of centralising aid allocation to those in need.
According to the reports of international organisations, disabled people have an increased risk of contracting coronavirus due to many barriers that they face in their daily lives. Difficulties for disabled people may arise due to the physical inaccessibility of the basic infrastructure, necessary means for hand hygiene, such as washbasins, sinks, as well as the physical difficulties of thorough hand washing. Moreover, these people constantly need to touch their assistive devices (wheelchairs, white walking canes for the blind, crutches, hearing aids, etc.), which involves the necessity of disinfecting not only their hands but also assistive devices.
Deafblind people who receive information from the outside world with the help of a tactile sign language cannot help touching hands of interpreter-guides. Children and adults with disabilities, people with mental disabilities who need the daily support of relatives and social workers, for example, deafblind or residents of institutions cannot isolate themselves and enact social distancing. As a result, they are at higher risk of contracting coronavirus infection.
According to a recent World Health Organization report, if impairments are associated with respiratory functions, the immune system, heart disease, or diabetes, people with these forms of health conditions may be at greater risk of developing more severe cases of coronavirus if they become infected. At the same time, with the increasing burden on the health care system, disabled people may experience difficulties in accessing necessary medical services.
Is the information on coronavirus accessible for all?
Many positive measures have been taken in Uzbekistan to ensure the accessibility of information on precautions for protection against coronavirus infection. At the initiative of the Youth Union of Uzbekistan, together with the local MY5 TV channel, videos were prepared for children and translated into sign language. The Main Department of Internal Affairs of Tashkent also prepared a warning video with a sign language interpretation.
Starting April 2, UzReport TV, in partnership with UNDP Uzbekistan, began broadcasting coronavirus briefings with sign language interpretation. Besides, UNDP in Uzbekistan, together with the Government of Uzbekistan, printed Braille posters to support visually impaired people during the COVID-19 pandemic.
It is also desirable to provide information in an easy read format so that children and adults with learning disabilities can have equal access to vital information. This format would be beneficial for other categories, for example, poorly educated deaf and hard of hearing, who rely more on signs rather than textual information in communication with the outside world. For example, the Public Health England has prepared an easy read guide – information format for people with learning disabilities, using pictures from online photo bases like Photosymbols along with plain text to make the information easier to understand.
Secondary impacts of quarantine measures
Along with the primary exposure to coronavirus, Disability Inclusion Team at the UK Department for International Development (DFID) warns about the serious and disproportionate impact of secondary measures on disabled people in response to the coronavirus pandemic.
China’s lesson on the fight against coronavirus has shown that strict quarantine measures, self-isolation and social distancing are effective in preventing the spread of infection. However, by applying such tough measures we jeopardize the livelihoods of socially vulnerable categories of the population. This negative impact can be especially serious in low- and middle-income countries, where disabled people are more likely to be employed in the informal sector without the protection of their labour.
The fate of men with hearing impairments who were employed informally as parking attendants in the capital city Tashkent, deaf women who worked part-time in public places with floor scales, sellers of flags and trinkets at busy intersections remains unclear. With restrictions on the movement of private cars and people in the capital and regional centres, they were left without earnings and with limited access to existing social protection programmes.
How to survive on an unpaid vacation?
Only about 7% of disabled people are formally employed because of the label of ‘unemployable’ given by the Medical Expert Labour Commissions (VTEK), discrimination based on disability, stereotypes and inaccessibility of the open labour market with a non-working 3% employment quota for disabled people.
Workers with visual and hearing impairments at specialised training and production enterprises (TPEs) of the Society of the Blind and the Society of the Deaf have lost their jobs and basic earnings. After quarantine was introduced on March 16 in Tashkent, some were sent on paid leave, others were sent to work remotely from home. Many TPEs are not designed for distance working, and blue-collar disabled workers cannot work remotely without access to equipment at specialised enterprises.
Due to the suspension of the activities of TPEs and subsidiaries, self-finance public associations of disabled people, which are non-governmental non-profit organizations (NGOs), are now facing financial difficulties and are not able to allocate salaries to their full-time employees and workers of the TPEs during the quarantine period.
“From March 20, we were sent to work remotely from home with our salaries sustained until April 1. The main income of our company is formed at the expense of 2% accruals from the cost of the goods and services sold by our subsidiaries and renting of the Society premises to private businesses. Our salaries come from these revenues. Due to the financial insolvency of the Society, we were forced to go on unpaid leave from April 1,” said Ulugbek Mamatkhanov, a leading specialist in the organisational and social department of the Central Board of the Society of the Blind of Uzbekistan.
Only a few enterprises of the Society of the Blind continue working after receiving an order to provide mattresses, bedding and a special form for the quarantine zones. The Tashkent TPE-1 of the deaf also received an order for the production of medical make and uniforms and provided residents of the dormitory of the deaf with jobs.
The salaries of sign language interpreters of the Society of the Deaf have already been delayed due to the lack of orders and the volume of work in the TPEs of the deaf, the main source of income for the Society of the Deaf. Often sign language interpreter come from deaf and hard of hearing families themselves, which had influenced their choice of profession. On their shoulders lie not only of their children but also their deaf parents who need social protection.
Before quarantine was announced, many disabled enterprises were already not able to compete in the market and stood idle without orders while their workers had long been accustomed to this state of affairs. With the announcement of tough quarantine measures, their financial situation has worsened. Many full-time employees of disabled people’s organisations and TPE workers do not have savings because of their low or unpaid salaries, and in conditions of prolonged unpaid leave, it will be extremely difficult for them to survive.
Are social benefits enough?
The size of disability benefits and pensions is inadequate for the needs of socially vulnerable families due to the lack of an officially fixed consumer basket and a minimum subsistence levels. The disability allowance from childhood is 436,150 sums (about $ 45). At the same time, the experimental calculations of theMinistry of Economic Development and Trade for the first quarter of 2019 in the Tashkent and Fergana regions showed that the consumer basket is 650 thousand sums, and the minimum subsistence level is 800 thousand sums, which is almost twice the amount of disability benefits since childhood.
In the context of the coronavirus pandemic, the costs of masks, disinfectants and other protective measures are added to the already existing list of additional costs for medication, care and rehabilitation goods and services. The paralysis of public and private transport calls into question the food security of children and adults with disabilities and their families. They may have difficulty buying basic food and care products. Home delivery may incur other costs.
At the same time, it is difficult to rely on one-time and occasional food assistance provided by the Center for the Coordination of Sponsorship Assistance under the Ministry of Mahalla and Family Support. The mahalla committees work differently – some people with disabilities and their families receive basic foodstuffs, and some do not at all feel material or moral support from mahalla representatives.
Can all get through to 1197 hotline?
Since April 1, the provision of individual charitable assistance by volunteers to vulnerable populations was limited; some kind of centralisation of aid allocation activities took place to minimize the risk of contracting coronavirus by the recipients of aid. Under the new rules, all NGOs, foundations, volunteer organizations, sponsors and others must assist by going through the Sponsorship Assistance Coordination Center or leaving information about those who need help. To do this, in Tashkent, they need to drive to Uzexpocenter, register themselves there, they must be given a sticker within two days, all help must be sanitised, people need to get special clothes and arrange transportation.
However, many people in need cannot reach the hotline 1197 – the number is always busy. Moreover, deaf and hard of hearing people in need of help cannot seek help themselves. On July 1 last year, the Ministry of Emergencies launched an emergency dispatch service for people with hearing and speech problems with the ability to communicate via video or Telegram in sign language. It would be good if, based on the existing emergency services of the Ministry of Emergencies deaf people could contact the Center for the Coordination of Sponsorship.
“In addition to the hotline, we are already ready to launch the Telegram bot and website. However, we now doubt our potential and ability to respond and deliver charitable assistance in the city of Tashkent. If we launch the website and the bot now, we expect to receive about 15-30 thousand requests that need to be filtered to the criteria of the necessity of assistance. There is still a risk that after an avalanche of applications, disabled people and the elderly may be left behind without due attention among thousands of applications,” explains the representative of the Center for the Coordination of Sponsorship.
Centralisation of charity: good or bad?
Although this step was made out of good intentions to ensure security, in practice this approach may not be very effective. Firstly, the Ministry for the Support of the Mahalla and the Family, despite the presence of its territorial units, may not have all the information about those in need on the ground.
It has already been noted earlier that many are missing from the lists of mahalla committees and it will take a lot of time and effort to create an updated database of the Coordination Center. Many disabled children and adults remain invisible in mahalla lists and official statistics – many refuse to register themselves or their children as disabled or because of bureaucratic obstacles and corruption they cannot get an official disability status through the Medical Labour Expert Commissions (VTEK).
Chairman of the Association of Disabled People of Uzbekistan Oybek Isakov said that VTEKs suspended the reception of citizens, and the terms of medical examinations for persons with temporary disability status were extended until the end of quarantine. The payment of benefits to families with children, childcare benefits and material assistance to those who received it in the mahallas was also extended for 6 months without interruption.
However, can decision-makers at the top know about those in need at the lower levels? The monopolisation of aid allocation may entail an increase in transaction costs for the collection and processing of information, decision making and control, which will require more time and hinder the rapid response to the unique needs of individuals and families. A single call centre will not be able to withstand the influx of calls, and many in need simply will not be able to reach the aid Coordination Center.
Secondly, a one-size-fits-all approach with the same set of basic food products will not be able to satisfy the individual needs of vulnerable children and adults. Members of their families and relatives, neighbours in the mahalla, as well as public organisations with expertise and skills in working directly with them are better aware of their specific needs and requirements.
“We have an urgent need for the delivery of vital medications that cannot be interrupted. But in this way, the confidential diagnosis is violated and other legal barriers may arise. Many people living with HIV are not ready to speak openly and reveal their HIV status due to stigma and discrimination in society. And when using the services of this call centre, inevitably will be forced to reveal their HIV status, and I don’t exclude that people’s data will be revealed through word of mouth,” explains Sergey Uchaev, chairman of the Ishonch va Hayot NGO (“Faith and Life”).
Who suffers the most in isolation?
Self-isolation and social distance measures can affect children with special needs, their parents and guardians, most of all. A sudden change in routine entails difficulties in adapting to new conditions in children with severe autism, autism spectrum disorder (ASD), with Down syndrome and other learning disabilities. Such children have complex needs not only for financial assistance but also for medical and social rehabilitation and professional services of an occupational therapist, physical exercises, trips to the pool, etc.
“It is unrealistic to call 1197. Even if we get through and want to pass on the lists of others, many parents of children with autism deliberately refuse help, because they are afraid that when they come from the Help Center, they will be told: “What ?! Do you have a private home? Does your child walk? Why do you need help?” We still have in our heads that a disabled person is a person who lies, has no arms, no legs, or with severe cerebral palsy. But we also need help, we are getting crazy in quarantine,” says Farhad Artykbaev, father of a son with autism, founder of the “Angelochek” club at the Republican Center for the Social Adaptation of Children (RCSD).
Most often, single mothers are involved in raising children with special needs, which creates additional difficulties for them when buying food and care products. With limited transport and taxi services, parents are afraid to go to the store with them: children refuse to wear medical masks, but leaving them alone at home is extremely dangerous.
“Our child is very fond of being driven in a car and calms down during the drive, but now we are limited in this. My son is very ill now. Is it impossible to organise a social taxi for our children and just have a ride in the city for half an hour? This is our chemotherapy, our hemodialysis … ”– Farhad Artykbaev despairs.
The mother of the child with autism told me about her case when, when receiving aid she was forced to be photographed with her son for reporting purposes.
“They came to us from the hokimiyat [city administration], brought a gift to my son – a present for disabled children. I opened the door, I wanted to take it, and this man says to me: “I need to take a picture”. I answer: “I don’t want to be photographed, and my son does not need to be photographed.” And he says: “Then there is no present. I need a photo report. ” I say: “Well, maybe I’ll just sign what I got.” And he: “No, just a photo.” In the end – he took away the gift. I was shocked, ” the mother of a child with autism is disappointed.
I would remind those who are in charge of aid allocation to abide by the rules of ethics for the provision of humanitarian assistance. It is necessary to get an informed consent of the recipient of aid before photographing and using personal data in published reports on the Internet and social networks.
In conditions of self-isolation and social distancing, not only socially vulnerable categories, but the entire population may have difficulty maintaining their mental health. In this regard, it is necessary to provide access to psychosocial support for those who experience stress during an outbreak of coronavirus, including the possibility of receiving psychological help via the hotline or online, subject to all the rules of confidentiality and anonymity.
Who is the most vulnerable to isolation?
Studies in low- and middle-income countries show that disabled girls and women are 2–4 times more likely to experience partner violence than women without disabilities of a similar age. Moreover, women with disabilities may have difficulty reporting the facts of their domestic violence and face barriers accessing health services.
During emergencies like the coronavirus pandemic, the risk of abuse and violence against women with disabilities is increased. Since families face additional economic stress and are forced to remain in long-term self-isolation due to strict quarantine measures, in some countries, there has been a triple increase in cases of partner violence.
Moreover, due to established social norms in our society, girls and women are more likely to take on the role of caring for children, including disabled children after school closures. This additional burden and disproportionate pressure on women will negatively affect their situation.
How to mitigate the secondary effects for the most vulnerable?
For disabled children and adults, quarantine was no novelty because many of them have long been living in isolation from society due to attitudinal barriers and the inaccessibility of the Uzbek society. Increasing the burden on our already underdeveloped and fragmented social protection system in connection with the measures taken to counteract coronavirus can aggravate the existing vulnerable situation of disabled children and adults and their families, increasing their economic and social exclusion. In this regard, it is urgent to consider all possible measures for their socio-economic support.
If disabled people who face a higher risk of developing serious symptoms cannot work remotely, according to WHO recommendations, they should be allowed to take paid leave until the risk of contracting the infection decreases. It is urgent to consider possible measures of financial support for associations of disabled people and their enterprises, as well as other NGOs in socially significant areas, which would contribute to the preservation of income in the context of limited savings of these population groups. At this difficult time, it is necessary to provide subsidies and direct funding to NGOs of disabled people and other public organisations that support socially vulnerable categories of the population.
Thus, we could kill two birds with one stone – having the necessary work experience and being well aware of the specific needs and requirements of its members and beneficiaries, specialised NGOs could effectively provide targeted support and at the same time pay salaries to their employees and support their volunteers, providing them with transport and other support for their volunteering activities.
It is important not to forget about disabled children and adults who have not got a disability group on time. Therefore, it is necessary to significantly simplify the procedure for inspection by VTEK bodies to ensure their access to social benefits and the state guaranteed support. It is possible to register disabled people remotely as it was done by the Russian Ministry of Labour until October 1, 2020. It is also necessary to consider the procedure for allocating technical rehabilitation equipment and assistive devices at the place of the current address of disabled people.
The Agency of medical and social services under the Ministry of Health, responsible for the social protection of disabled people, should periodically publish information in accessible formats for all categories of disabled children and adults, including in an easily read format. Many disabled people are not aware that disability terms are automatically extended due to the suspension of work of VTEKs. The Agency’s contact with services users is not well established.
Moreover, the Extrabudgetary Pension Fund, possibly together with the established Anti-Crisis Fund under the Ministry of Finance in the amount of 10 trillion sum, needs to work out the issue of increasing the size of social disability benefits that are inadequate to the current realities, at least for the period of quarantine. Thus, it would be possible to support disabled people who were left without work in the informal sector.
The top-down approach will not work effectively, and it is in such emergencies that it is necessary to develop a social partnership between the government and civil society, and not try to control the flow of material assistance through centralisation of aid allocation through the Help Center and the unified public foundation O’zbekiston Mehr-Shafqat va Salomatlik ”(“Mercy and Health of Uzbekistan”).
In emergency social support, it is better to rely on the bottom-up model, and assistance should be provided specifically by volunteers, their organisations and self-initiative NGOs. This can be done by instructing all volunteers and NGO staff on security measures and providing them with all necessary protective equipment (masks and a special uniform) while providing support to socially vulnerable groups of the population.
It is necessary to use the current difficult situation to build the organizational capacity of underdeveloped civil society institutions for social support of the population and consider them as active agents, not passive recipients of charity. Representatives of disabled people’s organisations, as well as other public and volunteer organisations, should be actively involved in the planning, implementation and evaluation of assistance provided so that measures taken against COVID-19 are inclusive.