By Dr GVS Murthy
Though all children were impacted severely due to Covid-19, children with disabilities having special needs were impacted more adversely. There are 375 million children aged less than 15 years in India, of whom nearly 35 million have neuro-developmental disorders. Most of them reside in rural areas where access to health and rehabilitation services is inadequate. A significant proportion of these children come from poorer economic strata.
Cerebral Palsy and Autism Spectrum Disorders (ASD) are major problems in this age group. Nearly 2 million children suffer from ASD and another 2.2 million suffer from Cerebral Palsy. Children with ASD need a structured life bereft of unnecessary surprises while children with Cerebral Palsy need regular physiotherapy. Both these groups of children, along with many others with other types of disability, faced significant challenges during the two waves of Covid, especially the first wave when all supportive and rehabilitative services ground to a halt.
Coping with Change
Depression, difficulty to cope with change and barriers in interactions are seen even in non-Covid times among children with ASD. Children with Cerebral Palsy reported increased levels of anxiety and a sensation of pain during the pandemic. Another major health concern is the sudden cessation of medicines, which has a detrimental effect on the condition being treated. Children with special needs suffered due to this in the pandemic.
Children with special needs need four support groups – parents, special teachers, therapists and counsellors — to take care of their day-to-day requirements. Unfortunately, when everything came to a standstill in March 2020, the parents had to cover up for the three support groups and this affected children with ASD and those with other special needs very badly as their routine was suddenly disturbed. Over a period of time, this also led to increased stress for the caregivers, especially the mothers.
Adapting to Change
Children with special needs also found the Covid protocols challenging as they did not understand why they had to adapt their behaviours to the changing situation like hand washing and maintaining distance from their loved ones or wear a mask when setting out of the house. The apprehension of the parents on Covid transmission compounded the fear and anxiety among children with these conditions even further.
Moreover, the absence of other social interactions affected the mental health of these children making them more irritable, restless and frustrated. Online education created more inequities for children with disabilities because the material is not inclusive and in some disabilities, attention span is grossly reduced. These cannot be a long term solution for children with disabilities for whom small classroom-style teaching and interaction is more enjoyable and rewarding. This could translate into a roving classroom mounted on a vehicle which can reach as close as possible to the children, even if it is for a reduced period of teaching time.
We, as a society, and the country need to plan as we now have time to introspect and reflect. Whether it is a pandemic like Covid or a natural disaster, a preparedness plan is a must. When the country signed up to honour the Sustainable Development Goals, it also vowed to facilitate inclusive development. This means that nobody should be left behind, especially in adverse circumstances. We need to understand what these children with disability need and insulate their requirements, so that appropriate health, education and rehabilitation services are assured for them at all times.
Covid has facilitated widespread use of tele-consultation pathways for the general population. We need to go a step further and design and offer dedicated portals to cater to the needs of these children with special needs.
Since most of these children stay in rural areas where specialised services may not be available, mothers as the primary caregivers should be empowered to administer basic counselling and therapy support. This can be done by having a 24×7 television channel dedicated to skilling the mothers and other caregivers, supported by a helpline for urgent needs. This can be like the agriculture or educational channels, which are beamed directly to the houses by Doordarshan.
Another initiative that will need to be supported by the government and the NGOs is allowing a team of counsellors, special teachers and therapists to continue to provide services during a lockdown or other restrictions on mobility using a mobile van. Schedules can be drawn up in advance so that both children and the parents are prepared.
Similarly, a mechanism needs to be developed that helps in meeting the health needs of these children and their caregivers using a mixed tele-consultation and mobile services approach. The next few months should be spent on developing the Standard Operating Procedures and protocols and in doing dry runs and drills so that such children and their parents never again suffer in this manner, the next time around.
(The author is Director, Indian Institute of Public Health, Hyderabad)
Now you can get handpicked stories from Telangana Today on Telegram everyday. Click the link to subscribe.