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I definitely feel overwhelmed by the amount of COVID-19 information, guidance, advisories, news, zoom meetings, technology platforms I have never even heard of, etc. It is hard to know what is the most important to read. In the last 2 weeks I have heard from many individuals with disabilities, family members, direct support professionals, service providers, volunteers, and other community members who all have unique support needs. I have no idea what other resources could be helpful at this time so instead I am just going to offer real talk right now and share some of the comments, questions and concerns I have heard in the last couple of weeks. The purpose is not to try to answer any of the questions (because there is no one right answer) or provide any more resources (because we’re doing that in the articles below), but rather to let you know you are not alone. So here goes…some funny…some not so funny…but all real!
The following are all direct quotes or questions we have heard.
What does alternative format for service delivery actually mean?
The idea of a video chat for day program services is just silly.
Why can’t we have someone from the day program come in our home?
Are people really going to the bathroom more – why are people hoarding toilet paper?
If we can’t get personal protective supplies what are some make shift things we can use?
Is my day program going to close forever?
I miss my friends.
My family is annoying me all the time.
Does Vodka work the same as hand-sanitizer?
Incontinence supplies should have the same priority as personal protective supplies.
I cannot handle seeing one more [edited for content] corona virus meme.
I don’t need any more cute art project suggestions I need to go to work.
Stop hoarding, my son has a lot of behaviors including smearing so I NEED WIPES MORE THAN YOU DO!
How much respite can I get?
What homeschool services exists for special education students?
Corona Virus Sucks!
How long will this last?
I use to dream of being able to stay home but I don’t anymore.
I never thought I would pay $40 to have toilet paper delivered.
While I did say I was not planning to answer these questions or give more resource I will make a few comments. First and foremost, questions related to services should be handled by your service coordinator at the regional center. I know service coordinators are working hard to connect with individuals and families right now and with large caseloads this is not an easy thing to do. That said; it is okay to be persistent in asking for services that you may need to get through these trying times. As for toilet paper hoarders… I really have no idea why this is a thing but I expect we will see A LOT of toilet paper donations after we get through this pandemic. The very idea that incontinence supplies are or were not given the same priority as personal protective supplies is just ludicrous. Vodka as hand sanitizer… well an ER physician said save it for drinking…. so…. I am no medical professional but I am inclined to listen to them. I know people are feeling lonely and missing their friends, co-workers, routines, and their lives before COVID-19 turned everything upside down and I hope we can all get back to our daily pre-COVID lives soon. Friendships and connections are so important so try to stay connected (and help other do the same) to friends and family even if it is just a quick phone call, text, recorded message or connection over social media.