Ensuring sensitivity towards people with special needs during lockdown
The disruptions in activities of daily living caused by the pandemic can take a toll on mental health of people, especially those with pre-existing mental health conditions, making them more vulnerable. These circumstances are particularly ordeal for people with disabilities and their families, confined at home while special-needs schools and support programs remain closed.
Life under lockdown has affected persons with disabilities on several fronts – caregiving, access to medicines, social distancing and brought a sudden change for many children with special needs, who lost their reassuring routines, cut off from friends and teachers. While caregivers are additionally burdened with this lockdown and preventive measures due to virus spread, experiencing high levels of fatigue and distress. Accessibility to right information could be another challenge.
It is difficult to expect these children to understand the lockdown rules, why they need to be at home, sometimes away from their own family members/caregivers due to quarantine. Other children may have been isolating themselves in their bedrooms or destabilized by lockdown restrictions. Uncertainty in the current times, may give rise to many questions in children like “When will the epidemic stop? Why I cannot meet my friends? When can we go out again? etc”.
Persons with intellectual impairment cannot be expected to easily practice or cope with self-isolation.
Many mental health and allied professionals are developing creative tools to keep communicating and working with their patients, including communication through social networks. Though some teachers fear that kids will have to spend months relearning skills they may have lost during the lockdown period. Parents are also organizing activities to add more structure and keep their kids engaged. Some parents of children with disabilities are now getting hands-on lessons to give basic therapy and learning behaviour management techniques is added to their responsibilities.
Recognizing the burden these regulations place on people with autism, French President Emmanuel Macron announced an exception that allows them to go out to customary places without having to observe time or distance limits.
The Department of Empowerment of Persons with Disabilities (DEPwD) under Ministry of Social Justice and Empowerment in India has issued “Comprehensive Disability Inclusive Guidelines” to States and Union territories for protection and safety of persons with disabilities in light of Covid-19 outbreak. (pib.gov.in/PressReleasePage.aspx?PRID=1608495)
We as a society need to come together with the government to find concrete solutions in-order to ensure persons with disabilities don’t suffer during COVID-19 lockdown period. Special training may be required for frontline professionals to deal with PWDs/People with special needs when quarantined. France is still taking some good steps in terms of educational opportunities for children with autism spectrum disorders.
It is important that frontline professionals understand the needs and know how to deal with people experiencing mental health issues and people with special needs. Even though helpline numbers and online counselling mechanism have been developed to help persons with disabilities as well as their families to cope with the quarantine period, it is not very helpful for people who require physiotherapy as the exercises need to be done in person and not online or over the phone.
Special passes could be issued for caregivers of people with special needs who need assistance/personal care and support 24×7 (following strict preventive hygiene measures). Steps need to be taken to ensure safety as they are more vulnerable to accidents or be crime targets. Maintenance facilities for assistive appliances like wheel-chair and aids should be made available. Supply of medicines especially for those on long term medication or having chronic medical conditions like epilepsy needs to be taken care of. Even if there is food distribution during the lockdown, there are families with more than one person/child with disability or parents who work as a daily wager in the unorganised sector, need support from the society. They should be given access to essential food, water, medicine, and, if possible, such items should be delivered at their residence or place where they have been quarantined.
As parents, we can offer positive reinforcement when children cope well or complete their task. A certain amount of structure and proceeding in a predictable planned manner helps persons with intellectual disabilities to function better. It may be difficult to adapt initially but create a new routine that is comfortable for your child in current scenario. You can include a comfortable flow of household chores, creative activities, indoor fitness routines. Once this is established, allocate time slots for what you have planned and take help of family members who can supervise or be with the child to complete these activities.
With online support from the therapist or teachers and some adaptations, you can work on your child’s individual goals. The best thing is to reach out to the specific teacher or therapist for support rather than looking up content online which may or may not be appropriate for their child. Parenting a child with special needs is challenging and so is the need for self-care more necessary. Mind your own mental health. It may be good to be in touch with a counsellor or mentor-parent online to understand and implement coping strategies.
Sometimes the things we cannot change, ends up changing us, leaving us with a new perspective. Just a shift in attitude is required from thinking the child is behaving badly or acting out, to understanding that he/she is struggling to handle something difficult may encourage you to help them through distress. All a kid needs is a little help, hope and somebody who believes in them. Remember…as Temple Grandin said…”they are different, not less”.
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