The COVID-19 global pandemic seems to have caught our world by surprise. Our world leaders, businesses, financial markets, local communities, schools, and hospitals were all caught off guard by the swiftness of the spread of this virus. It is clear that, as a society, we’re not prepared to handle such a pandemic.
Our hospitals did not have the proper level of supplies and equipment, our education system had to learn how to teach students from a distance, our world leaders appear to create protocols on a day by day basis, businesses had to lay off workers due to not having enough “emergency” reserves to keep their employees employed with little to no current revenue, and our financial markets tumbled because of all this uncertainty.
What would have happened if this type of event had been thought about before it occurred, and then planned for? What could have been different? Is it possible teachers would have been trained on distance learning? Is it possible our leaders would have had a game plan they could have followed?
Is it possible business owners would have kept money in reserve during good times so that in these short-term emergencies, they would not have had to panic and their employees would have still been employed? Is it possible?
The same level of uncertainty, fear, and subsequent panic can happen in our own families outside of a pandemic. I have seen it in my office. Imagine the following—I walk into the conference room to meet with a sibling of an adult with autism whose parents have just passed away.
Her hands are shaking, palms sweaty, legs frantically bouncing up and down, tears in her eyes—she is in a palpable panic, all because of uncertainty. She is making decisions on a day by day basis without any game plan.
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Questions flow from her mouth like a raging river:
- Where will my brother live?
- How will he get around? He has a part-time job, but I have a full-time job. How will he get to work?
- How can I help him with his government benefits? Do I need to go to the Social Security office in order to be authorized to make decisions?
- My parents left some money for both my brother and I, but I don’t know how much he will need. Does he need all of it for his care and support?
- I have heard that if my brother has $2,000 in his name, he will lose his government benefits, which provides his monthly income, his health care, and services that help him live in the community. The money my parents left is certainly more than $2,000. What do we do with this money?
- Now that my parents are gone, if something happens to me, who will help my brother?
Concern and fear come fast and furious. She has great questions, and she has true reasons for concern. Due to the fact her parents did not provide her with a framework that would have answered all these questions (and more), she is left in an emergent situation with no support and no guidance.
She needs to find the experts, she needs to find the answers, and she will have to create, implement, and manage the plan, all while putting her life and family on hold. It does not have to come to this.
It is easy to dismiss the concern, to squelch the fear, and to eliminate the panic. By thinking ahead, by discussing the situation we all know will occur (we will die), and by creating a solid plan, we provide a gift to our child with a disability, we empower the next caregiver, and we are left with a sense of relief and peace because the question “What happens next?” no longer hangs over our head!
This article was featured in Issue 104 –Transition Strategies For Kids With Autism