Our 20-year-old son, Andy, officially started a break from his grocery store job on March 16 as COVID-19 started spreading where we live. This was an incredibly hard decision for us because we didn’t know how long this break would last. We were very worried at first because if an employee is normally off the schedule for more than 3 weeks, they lose their job. So it was scary to ask for time off because Andy’s had his job for 3 years and loves his coworkers. He got the job himself, and we know that people with disabilities often have a hard time finding work.
We tried having him use gloves at work and clean off every cart with Clorox wipes–and he did a great job at it and understood the significance of coronavirus especially for him. But we were worried because he falls into that immunosuppressed category. He had lots of respiratory problems until he was 12-13. He would get croup/stridor at least once every year and go to the ER … twice where he turned blue and needed 911 support. He also had serious pneumonia in second grade and ended up in the Pediatric Intensive Care Unit. It was terrifying when the oxygen level of his blood dropped to 82, and he needed ventilator support. We just couldn’t risk doing that again. There are wounds that scab over and scar when your child has been in the hospital in distress like that, and you never stop feeling vulnerable.
Fortunately, his job has said he can come back whenever the coast is clear, but we still don’t know when that will be. We’re fortunate that we can survive financially even though it’s tight, but we’ve been at home for over a month and keep trying to figure out our new normal. Before quarantine, Andy was working as a church service missionary—volunteering at our temple and food pantries; he was coaching high school lacrosse; he was working at a grocery store; and he had just started a photography business with his dad. Now our church is closed; he can’t risk going to the food pantry or grocery store; and school and lacrosse season have been cancelled. Our direct support provider also struggled to transition to online support.
Our goal at KentuckyWorks is to get people with disabilities into the competitive employment, but what does that look like during COVID-19 when people with disabilities might be losing jobs in the service industry or taking breaks if they have medical issues?
Our new normal has been a lot slower, and it’s been hard to see so much of Andy’s schedule just dissolve. But we’ve found some different meaningful things to do to try and keep up his health, mental well-being, and job skills. We have had a wonderful friend who is recovering from knee surgery and is reading with Andy every morning over Zoom at 9am. My niece and nephew who have lost work have been substituting as his direct support professionals over Zoom to practice reading with him from 10:30-noon. Andy and his dad have been taking photos of beautiful and remote places to add to his collection, and we have been disc golfing in the yard for exercise. We have also been trying to serve others by taking photos of graves as part of the FindaGrave project—like a scavenger hunt at little old cemeteries. In addition, Andy’s trying to FaceTime all of his friends and family and make videos and drawings to help other people be happy– especially his lacrosse boys. We also have more down time where he’s watching TV and messing around with social media more than is probably healthy, but that’s just life as we’re working from home with younger sisters. And there are times when he’s really mad and sad about the virus.
So how have you all been holding up? What are some ways that you all have been helping your loved ones with disabilities who might have lost work? How are you building job skills, maintaining relationships, and getting the services you need? This is a weird, scary time, but this is also a time for families to discover and build on the talents and skills of their youth, a time to consider businesses in the community that could utilize these skills and talents in the future, and this could be a time to reach out to family and friends and identify contacts at those businesses who might have some time to talk right now.
Below are some resources you might want to check out to help you at this time:
- The Yes! Center recommended that families could use this time to develop the KentuckyWorks Youth Vision Statement to share with teachers and professionals when we are able to see each other again.
- Kentucky SPIN has a number of webinars available through the month on employment topics, and they have guidance on COVID-19.
- Down Syndrome Louisville is offering virtual classes for people with disabilities.
- The Down Syndrome Association of Central Kentucky is offering virtual games, hangouts, and COVID-19 information.
- Many local service providers and vocational rehab offices are offering virtual classes. In addition, many employment counselors are also available via Zoom. You will want to contact your local providers to find out about what resources are available.
Other financial survival tips for people with disabilities during COVID-19:
- Make sure you are reporting your monthly income via the SSI app or online or over the phone so that if your income has dropped, you are getting the correct SSI payment amount.
- Get more information about stimulus payment for people who receive SSI.
- Now would also be a good time to open an ABLE account so that you can put any stimulus funds in there.