Tanmay is a 4 years old boy, living with his parents in one of the underprivileged districts of Maharashtra. Since 2 years when Tanmay was diagnosed with autism spectrum disorder, his parents have been taking him for speech therapy, occupational therapy and follow up visit to pediatrician clinic. All these services as well as his paediatrician are based in a city that is 160 kms from their place, requiring Tanmay and his father to stay there for a week every month. Apart from this, Tanmay also goes to a pre-primary school near his house. Since the lockdown, all this came to an abrupt stop, changing what was so far routine for Tanmay. His family is seeing that he has become more aggressive and obsessive, and seeks more attention. He wants to take more play time and hardly responds when called. He is obsessed with trains these days, wants to look at the train videos endlessly and play along with train toys. Diverting his attention from it has become even more difficult. Although the therapists have given instructions and exercises to be done at home, Tanmay’s response and interest is very reduced. Family members try to keep him active by showing kids’ workout videos, poems etc. on mobile or TV, to keep him occupied. But it has been difficult for his pregnant mother with everyday increasing behavioural issues.
Since the COVID-19 pandemic, life has been full of hurdles for children with disabilities and their caregivers, particularly those residing in small cities or in rural area. The therapy centres in major cities are mostly operational and the caregivers are trying to take their children to the centres, or the therapy is continued at home with the help of innovative ideas and use of technology such as videos, tele-calling. However caregivers in peripheries are struggling to keep up with the routine of their children with disabilities, due to lack of- access to therapy, information on delivering the services at home and ability to use technology for caregiving. Even if the rehabilitation centres, for instance those run by local government are open, parents are sceptical in visiting them with their child due to the fear of COVID-19 infection. Additionally, there are also challenges in availability of special diets, medicines or equipments that are suggested or the child requires.
Children are exhibiting the break in their daily schedule and isolation from outside world, school peers through increased behavioural issues such as irritability, restlessness, fussy eating and so on. They are in some cases refusing to follow instructions given by parents, seeking attention in unusual ways such as biting, screaming, not eating. Along with these, parents are also worried that there will be break and regression from the improvement their child has shown so far with the regular therapy. Even after replicating the school and therapy at home, the response shown by the child is low. This is not limited to the child, but also affecting the mental health of caregivers and family members, causing panic, anxiety and depression.
Understanding the situation and problems faced by people with disabilities, several local and state level organizations have started online or telephonic counselling services. Although the Rehabilitation Council Of India (RCI)- a central body that regulates and monitors services given to persons with disability- has started a COVID-19 Mental Health Helpline -Toll Free Number 080 46110007, the uptake of these helplines for children with special needs remains very negligible. The psychologists providing services over this helpline feel that there is need to create awareness and promote this helpline. They believe that guidance to caregivers of children with disabilities over telephonic or online counselling could be very beneficial for both child as well as the caregiver. RCI has also displayed a state and district wise list of volunteer psychologists along with their contact details on their website- http://www.rehabcouncil.nic.in/forms/list.aspx?lid=1144&Id=20.
Ministry of Social Justice & Empowerment of India has issued Comprehensive Disability Inclusive Guidelines” to States and Union territories for protection and safety of Persons with Disabilities during Covid-19 pandemic. Some action points need to be emphasized particularly keeping in mind children with disabilities and their caregivers living in small cities, villages and areas difficult to accessible:
- All information about COVID-19, services offered and precautions to be taken should be made available in simple and local language in accessible formats, and appropriate media that can reach up in all the areas should be used to create awareness
- Relevant information on support and helplines for children with disabilities should be a part of all awareness campaigns.
- Caregivers and children with disabilities should be allowed to reach the rehabilitation centres by exempting them from restrictions during lockdown or providing passes in a simplified manner on priority.
- If not possible, local governance authorities should assist the caregivers in using the technology for reaching out to the therapists and counsellors. Home visits by therapists could be arranged wherever feasible.
- Communities should be encouraged to extend support to the families of children with disabilities, in procuring essential items, medicinal supplies and equipments as well as transport to the services or hospitals. If necessary, help should be taken from Non-Governmental Organisations and Civil Society Organisations/Resident Welfare Associations.
- The District Officer dealing with empowerment of persons with disabilities should be declared as the District Nodal authority in respect of children with disabilities. They should monitor the requirements of children with disabilities and their caregivers in the district periodically, and resolve the issue within the resources available.
(This article is informed by the discussions with two caregivers of children with disabilities, two psychologists and a physiotherapist working in the field of children with disabilities.)