How children are coping with disabilities amid COVID-19 pandemic
Guwahati: Nine-year-old Disha has just completed her 16th artwork; a stream nearby as seen through her window. She keeps a strict count of her works in her little diary.
“It’s all she does now,” says Smriti, her mother -- a single parent. Disha started this new hobby since the lockdown was imposed to curb the spread of COVID-19.
“She doesn’t go anywhere, just stays indoor all day, no friends, no school, just nothing," Smriti adds.
Disha was born deaf in Nagaland. Before the lockdown, she would go to school one for special kids and play with her peers- but all that has changed now. Even if she wanted, the family cannot afford a computer or a tablet, neither can they afford data to help her study online.
Disha is not the only child in India who has been left to her fate. According to a recent survey of 3,627 people conducted in Nagaland, Odisha, Chennai, Jharkhand, Kashmir and Tripura, among others, 43% of children living with various forms of disabilities were considering dropping out of school. The study was carried out by Swabhiman in May.
The reality of the lockdown has brought untold hardship to billions across the world. Sadly, when leaders and analysts talk about the negative impact of the pandemic, people with disabilities (PwDs) are hardly ever mentioned. This goes to show once more how marginalised this group of disadvantaged people are in the world. As the educational sector conceived plans to go online, not much thought was given to accommodating those who cannot see, hear, have some kind of brain impairment, and those who are autistic, to mention a few. This reality is more evident in several parts of India. This is not just about needs, but also has a lot to do with the disruption in schedules and patterns.
As Sukanya Rajkumar, a special needs education volunteer says, “Children with special needs often find security in routine and structure and this is how they understand their world. They know what is going to happen next by cues in their environment and what usually happens at this time. So, when everything suddenly changes, and change for children with special needs is often extremely difficult, their world is suddenly unpredictable and scary.”
This structure is one important component that schools provide, but one that has been missing since the lockdown. The expectation is for parents to try and work out a structure to keep their special kids going. Rajkumar gives an important insight: “It is important that we as parents try to create new routines as soon as possible in the home setting. We need to create structure that brings predictability again, and also bring in things that our children love such as painting, playing ball, etc, and try to do these activities at the same point each day. This may be to create different routines and activities in different rooms and put together a simple picture schedule for their day,” she adds.
The situation is tough for families at the lowest ebb of the economic cadre. Sadly, most children with disabilities are from the poorest backgrounds. Parents often strife to put food on the table and may not have the luxury of homeschooling their special children or dealing with the psychological, emotional and physical consequences. Groups and the government must intervene and pay attention to these kids because they matter too.
Take 10-year old Dimpi and Bani, her six-year old sibling for instance. They suffer from cerebral palsy, a group of disorders that makes it impossible for them to walk, talk, listen or sit properly. Schools and therapy centres used to provide sessions and an avenue for kids like Dimpi to get the assistance they need. With the lockdown, they can’t attend one-on-one therapies for obvious reasons. Their mother Neha has had to find a way to take care of two children with 90 percent disability.
For Parineeta Haloi, from Jorhat, who can manage to afford consultations, it has been a horrendous couple of months. Her son, Rishav is autistic. “My child is aware of his disabilities and he is learning to accept the way he is. However, the lockdown period has been really difficult for him,” she says. “He is unable to go out anywhere. He has been living an isolated life. He misses his friends. How long will he keep colouring, or reading or playing with his toys? He is mentally disturbed. These days he doesn’t even talk to us. We are consulting with a psychologist for support. We are terrified that if the lockdown goes on, it will create more psychological issues,” she notes with anxiety in her eyes.
The Assam Society for Protection of Child Rights is one organization that is leading the charge in the state to help such families find succor in a time like this.
According to the programme manager, Ashok Sharma, a lot is being done in that regard. “We are training staff and organising regular online psycho-social counselling. We’re ensuring that the children are safe and free from any kind of physical, emotional, sexual abuse by staff, other people, family members, or within children groups. We take regular feedback. We are unable to organise any vocational training at the moment but online counselling is going on,” he says.
Continuing, he says, “We have recently launched an aftercare programme by collaborating with Guwahati-based Destination NGO. The rehabilitation programme focuses on kids above 18 years of age. We provide annual grant-in-aid under Integrated Child Protection Scheme (ICPS). Recently for lockdown period, we have launched another programme wherein we are training caregivers on COVID protocols such as handwash, social distancing, sanitisation. If caregivers or staffs from other district want to join any institution, they have to undergo COVID test.”
Much of this programmes are done on the assumption that children with disabilities have access to online programmes and sessions. The reality is that they do not.
According to the survey cited earlier, parents of 86% of children with disabilities (CwD) admitted they had no knowledge of the use of technology while about 81% of teachers indicated lack of access to educational materials to engage children with disabilities.
The study also showed that 64% of students (CwD) lacked smartphones or computers at home, while as many as 67% of students with disabilities said they needed computers, tabs or other devices to aid online education. This shows a huge gap in what is needed and what is available, threatening the future of millions of children across India.
Arman Ali, the executive director of the National Centre for Promotion of Employment for Disabled People (NCPEDP) sums up this need, “Technology is definitely helpful. However there is a digital divide, not everyone can afford a smartphone. The Shishu Sarothi NGO in Guwahati is doing a wonderful job by providing tremendous digital support. However, the rural population is unable to access the benefits. Multiple options for education and entertainment should be there for disabled adults and children; audio-visual, radio whatever feasible. We have been doing a lot of zoom sessions, but people are unable to measure the impact. It will take time,” he says.
“I too am a disabled person and I am trying to cope with the situation. The society is not much aware of the problems faced by disabled people. Another problem is there’s no accessibility – thus people with special needs can’t come out despite wanting to. A lot has to be done on awareness front,” he noted.
The Shishu Sarothi Centre for Rehabilitation and Training for Multiple Disability always seems to come up whenever support for people with disabilities during the pandemic is discussed. The NGO adopts a mixed model of education. As the executive director, Ketaki Bardalai says, the centre is focused on promoting ‘inclusive education’. “We provide school readiness programmes for mostly young children. This is done through a reverse inclusive playgroup. Many of our children have subsequently been placed in Sarva Shiksha Abhiyan (SSA) or private schools across the city – some of these schools include, Gyandeep Jatiya Vidyalaya, Tarun Ram Phukan School, Brooklyn Public School, Bal Bharati Public School, Playpen, amongst others.”
“Additionally, we continue to provide special education inputs to other students with more profound disabilities and high support needs, with a view to enable and empower the children and their families to better cope and manage their disability. We are also collaborating with a group of like-minded NGOs to implement an ongoing project to improve the quality of inclusive education in 16 select SSA schools in Guwahati and Karbi Anglong district,” she adds.
The Bharti scholarship programme is one way the centre is reaching out through financial support to young students with disabilities to pursue higher education. But it goes beyond the kids. There are also efforts at sustaining livelihoods through relief packages distributed to some families. “We have arranged for repeated rounds of distribution of relief rations etc to the families. We are also giving small grants to some of the families to help them recover their livelihoods. Revolving funds are also being considered for groups of parents of children with disabilities,” says Bardalai.
As an organization engaged in organizing online classes and sessions for CwDs and parents, Bardalai says they are conscious of the challenges. “We are arranging for distribution/lending of smart phones to families of children who do not have them, so that they too are included and able to participate in these sessions. By disseminating our knowledge and strategies to the parents and working in collaboration with them, we are finding considerable improvement and faster achievement of the goals set for the children.”
She adds that there is a strong need to approach the situation with a lot of creativity due to paucity of funds, including the needs for families to restructure and redesign their homes to make them learning environments using simple items. This has also been canvassed by Shishu Sarothi and the feedback has been impressive.
But the pandemic came with more than just physical difficulties. The mental stress of dealing with a new normal for people who are already dealing with so much cannot be quantified. As Bardalai notes, there is need for constant engagement. “Regular sessions with the children, counselling meetings and parents support group meetings held via zoom calls etc are getting good response from the parents, who are showing keen interest in the teaching strategies and planned activities. The children’s enthusiastic participation during the virtual Foundation Day celebration and more recently on Teachers’ Day was encouraging and inspirational,” she says.
While she acknowledges the support of the Assam government, especially in the early days of the pandemic, Bardalai says there is need to do more. “There is need for widespread awareness about the disability inclusive guidelines for support during emergencies so that all who need support can seek and access relief and that there is a clear SOP for helping families affected by COVID with appropriate health and logistical support.”
“Additionally, it is hoped that SSA and other Govt education related initiatives will be restarted and efforts to include children with disabilities and address their needs will be taken up in right earnest by them too,” she adds.
Shishu Sarothi is just one of many NGOs and bodies playing their part to assuage the sufferings of CwDs in India. Nothing beats the smile on the face of a person whose life you have touched. As government, an individual, a group, or whatever form you take, there is need to rise up and take a stand. It is important for all to lend a hand of support, because as we have come to observe, “until all is fine, none is fine”.
The world is picking up the ashes, continually thinking of ways to live with the pandemic until such a time when a vaccine is commercialized. Until then, there is need to pay close attention to the unique needs of special children because they too have a right to education, and so much more for a disadvantaged group in a world filled with marginalization.