Family Support for Children with Disability in COVID-19 Pandemic

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COVID-19 pandemic first case in Nepal detected on 24 January 2020 in Kathmandu district. From the day of confirmed cases to till now everyone is facing the pandemic situation. Everyone is familiar with the word COVID-19 since that day. Any age, race, sex, religion, nationality can be affected by COVID-19 if they didn’t follow the precaution measures. The high risk of developing symptoms of COVID-19 may be increased in people who are disabled, infants, older and also in people of any age who have other serious health problems as well as weakened immune system.

 According to first international disability report of WHO/World Bank (World Disability Report 2010), 15 % of world’s population has disability. As per census 2011, 1.94% of Nepal’s population suffer from some form of Disability. Disability is the condition not a disease. Disability is the difficulty in the function due to the loss caused by the impairments. So, the person with disability is also a differently able person. Impairment is a sort of deficit in the structural, psychological, fundamental, physiological state. Impairment may leads to disability. If a person with disability is not helped it may lead to handicap. Handicap is the problem suffered by the individual due to disability in interaction with the various social setting.  Disability has been defined based on an evolving and dynamic concept. There are innumerable types of disability which affect individual. The bill drafted for the integration and amendment of the laws related to the rights of disable people is under consideration in the parliament which has classified and defined 10 different types of disabilities. They are: 1. Physical disability 2.Visual impairment (Blindness) 3. Hearing impairment (Deafness)   4. Hearing and visual disability (Deaf-blindness) 5.Speech or language impairment 6.Mental and psychosocial disability 7.Intellectual disability 8.Hereditary Hemophilia related disability 9.Autism   10.Multiple disabilities. According to the Rights of Person with Disabilities Act -2016 of India 21 types of disabilities are enlisted. They are; 1.Blindness 2. Low- Vision 3. Leprosy Cured persons 4. Hearing Impairment (Deaf and Hard of hearing) 5.Locomotor Disability 6.Dwarfism 7.Intellectual Disability 8.Mental Illness 9.Autism Spectrum Disorder 10.Cerebral Palsy 11.Muscular Dystrophy 12.Chronic Neurological Disorder 13.Specific Learning Disorder 14.Multiple Sclerosis 15. Speech and Language Disability 16.Thalassemia 17.Hemophilia 18.Sickle Cell Diseases 19.Multiple Disabilities including deaf blindness 20.Acid Attack Victim 21.Parkinson’s Disease.    

This pandemic situation created the situation of lockdown for control and management of pandemic. Except the all emergency and necessary goods and services all the industries, institution, services and roads are closed. All the people are locked-down in their homes. As able human being we can follow all the precaution and safety measures. But the question is that what is the condition of disabled children in such situation? Are they safe? Are they getting right procedure to make themselves safe? Are they getting proper care and direction from parents and people around them?

This situation is challenging one for the parents having disabled children with them in home. But this challenge can be turn into opportunity to the parents if they wish for the same. Home is the first place where child is grown and developed. Most of times of disable children is spend in home rather than in school. In this situation, parents got opportunity, in this locked-down, to know more about their children especially one with disability.  It is best time to make bond even stronger than before between parents-child, between siblings and with grandparents also. They can teach new tasks, behaviors in home. When teaching- learning process setup in natural setting, it increase the chance of generalization. With the help of special educator or whoever have knowledge and specialized in this filed can guide to the parents to make and followed the Individualized Education Plan (IEP). Besides that parents can engaged them in indoor activities, games etc.

The level of disability can differ from one child to another. There are many ways in which parents can help their disabled children according to the severity level of disability. There are 4 level of severity of disability; Mild, Moderate, Severe and profound. Following intervention can be done in home by parents for their mild and moderate level disabled children:

  • Observation- Parents need to observe the current level of skilled behavior and problem behavior.
  • Selection- Parents need to select the targeted behavior and plan according to that.
  • Clueing- parents can teach new task by giving clue. Some kind of verbal clue (example; open, close, hold) or gestural clues like pointing with fingers.
  • Verbal Prompting- Verbal prompting can be done by giving verbal instruction. By giving verbal statement like draw, close book, washing hand etc.)
  • Physical Prompting- In physical prompting parents physically help to complete the targeted task. (example;  showing how to play ball by kicking the ball)
  • Chaining: Chaining includes a sequence of steps required to perform a behavioural objective. The steps in the chain are classified by task analysis. When each step is taught separately and sequentially until the whole behaviour is learned.

What if the child is severely or profoundly disabled? In such cases parents play prominent role for overall care and development. To teach Activities of daily living domain (ADL) task is most important for them rather than Motor domain, Language domain, Reading – Writing domain, Number- time domain, Domestic-social domain and  prevocational- Money domain. In ADL first need to prioritize the activities then break contents into sub activities and teach them regularly until and unless child can do without parents support. Hence, turn the challenging situation into opportunity and make it possible. Utilize this lockdown period and teach new behavior and task to your differently able children. Help them to enhance their maximum potential by staying in the home.

SUSHMA KHAIJU

M.Sc. Disability Studies and Rehabilitation Sciences Mahatma Gandhi University, Kerala

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