When You Have More Questions Than Answers and Your Life Turns Upside Down

/ April 21, 2020

By Janet Shouse

I’m sure that many of us these days swing between being extremely tired of reading about COVID-19 resources and information and wanting to know the latest updates on what’s going on with all things COVID-related. And sometimes these swings take place very rapidly. This is COVID-related, just so you know.

Two weeks ago, I asked readers to share questions or concerns they had about the coronavirus pandemic or related issues, and while I didn’t get any questions in direct response to that blog post, I am reading and hearing questions about several concerns from friends and colleagues. And in some cases, I’m still trying to find answers.

I see lots of questions about stimulus checks (or Recovery Rebates as the federal government calls them), and the good news is on April 15, the U.S. Treasury Department announced that people who receive Supplemental Security Income will automatically receive stimulus payments authorized by the Coronavirus Aid, Relief, and Economic Security (CARES) Act. The initial word that we’d received was that the Treasury Department would require individuals receiving SSI to file or have filed tax returns for 2018 or 2019 or fill out a “non-filer” form. Now, thanks to advocacy efforts of many people and organizations, those payments will be made via the same method by which an individual receives SSI. For more specifics about these payments, see The Arc’s fact sheet. 

We have also learned the stimulus checks will not be counted as resources that would affect a person’s eligibility for SSI, Medicaid, food assistance or housing, but the individual will either need to spend that money within 12 months or put in an ABLE account at that point. (See the fact sheet above.)

Will Getting Unemployment Benefits Affect Your SSI?

As you may know, part of the federal CARES Act included an additional $600 a week in unemployment benefits to boost a state’s regular unemployment benefits. The extra $600 payments will last for up to four months, covering weeks of unemployment ending July 31. I have learned, from U.S. Rep. Jim Cooper’s office, that the higher unemployment benefit will not affect a person’s eligibility for Medicaid, but it will impact SSI, Supplemental Nutrition Assistance Program benefits, and housing benefits. And if individuals qualify for even $1 in unemployment benefits, they will receive $601 each week they certify as being unemployed, until July 31. The recommendation from several experts is for people to put unemployment benefits and other income into ABLE accounts, so they aren’t exceeding the $2,000 limits on assets. But those monies will still be counted as income and are taxable. If I get more concrete information about this concern, I will share it. (If you want information about setting up an ABLE account in Tennessee, you can find it here.)

A personal story of the pandemic’s turmoil

Amy and Ethan smiling

Previously, I had asked folks to share how their lives had changed in the past few weeks amid the pandemic and the closures. My friend Amy Chanin kindly agreed to share her experiences so far about how the coronavirus and the resulting turmoil has affected her and her family.

Amy has bilateral profound hearing loss and wears cochlear implants. She was implanted as an adult, so she is very dependent on lip-reading and captions. She can’t use a phone for voice calls, which causes some barriers in health care as well as other settings. Amy also signs, but signs primarily with her three Deaf brothers or the families she works with in Deaf Education. She is also a parent of a young son on the autism spectrum.

Amy shared this on April 8: I lost my job as a substitute teacher due to school closures. I also had some requirements to do in order to get my master’s degree in special education that are placed on hold due to school closures. I also had another part-time job home-schooling two children, which really helped me with utilities and groceries. I lost that job as well. I also received child support consistently until just recently.

No child support and no income from subbing has affected my family.

I am a single mom, so it’s just me with two kids. We don’t receive any food stamps or rental assistance, so my rent is $1,700 a month. I do receive an SSDI (Social Security Disability Income) check, which helps keep a roof over our heads. I also moved recently (November 2019) to get my son into a better school, after he received multiple injuries at his previous school. I am also paying the other landlord money every month for breaking the lease. I am a Vocational Rehabilitation client, and tuition is due at the end of the month for another term for school. But VR’s building is gone due to the tornado on March 3. I still hope they can help me, even though things are kind of crazy right now. I still want to stay on the path of finishing my master’s in special education. As someone with a disability, it’s harder for me to find a job. I have a special education degree with emphases on Deaf Education from Vanderbilt University, so a master’s degree in Special Education will help get a career going to allow me to better support my family.

I do worry a lot, but I hope the stimulus check will give me some relief. We get food from the school handing out breakfast/lunches two days a week, which I am very grateful for. I try to be creative with some of the foods they are giving us. My son is a picky eater, so some of those foods are limited for him. I still go Kroger once a week to get his preferred items. I try to sell items on social media that I received from a family’s moving business, which seems to help us get by for the time being.

I am thinking about taking a third-shift job at Kroger or going back to my old job of delivering pizzas, but it’s hard to find someone to watch the kids. My daughter Olivia, 13, gets anxious if I am gone more than 30 minutes. She has some anxiety due to her brother’s behaviors and issues we had in past.

I have my son’s IEP meeting over Zoom on April 21 (today), we still maintain our counseling sessions on telehealth, and Ethan does speech therapy with Vanderbilt speech therapists over the laptop. They try to make it fun and interactive for him. Some things have been really interesting lately as we figure out our way around using technology to communicate with people–it’s even more challenging to find accessible ways to interact with people since I have a hearing loss.

The only good thing about this pandemic is that Ethan is catching up on his childhood: Playing outside more, sleeping late, trying to learn how to ride a bike, taking more walks to enjoy nature, sitting by the fire pit, and doing all the things we should have done more of at ages 1-7. We are learning to “relax” now that there’s more TIME.

Amy then provided this update: A new VR counselor did reach out to me on April 15, and I gave VR a tuition bill, so I am able to start back to school on May 1. Yay!

I should be done with student teaching in August and finished by September. I will then be looking for a long-term job. My goal is taking longer than I anticipated, but I will get there eventually. I’ve worked since I was a teenager, so I am used to working. I was a Deaf Education teacher for multiple schools for seven years. I lost my job due to the decline of students. Many babies with hearing loss now receive cochlear implants at early age, so they need fewer services when they are older. I am happy they are doing well with early intervention, because I understand what it’s like to grow up with a hearing loss and all the challenges that come with it.  I also used to work in the Nashville Public Library.  I am looking forward to joining the workforce again.

Another issue that I’ve encountered has been in terms of health care. I had an appointment with my doctor on April 13. I checked in online, and then a nurse called me. My daughter was in the shower, and I didn’t have anybody to help me answer the nurse’s questions. The nurse then sent me a message through the patient portal saying she couldn’t let me in the “virtual waiting room” unless I could find someone to answer her questions over the phone. Since she was chatting with me through the patient portal, it upset me a great deal that she could have asked me the required questions through the portal, but she would not.

Instead, the nurse told me that she was going to have to reschedule my appointment until I could have someone present to help me answer the questions over the phone. The appointment was to be a face-to-face conversation on Zoom telehealth, so I could have read my doctor’s lips, just as I always do during my medical appointments. I was really upset because I felt my disability prevented me access to the health care that I needed. I was upset with the nurse as well, for her lack of compassion and understanding.

Hope this helps! Stay healthy and thanks for helping people.

I very much appreciate Amy’s willingness to share her story. I value her courage in saying honestly how the shutdown, the school closures and stay-at-home orders have affected her both financially and emotionally.

I know the vast majority of us are worried about something or some things at this time. We may be worried about:

  • Our physical health or the health of our loved ones
  • Our financial health—our family’s, our community’s, our state’s, our nation’s, or the world’s
  • Our health care providers and other essential workers who are going into their workplaces each day and facing the possibility of becoming ill
  • Our emotional health or that of the ones we love—isolation is extremely hard on some people
  • Our jobs—will we still have one when our world returns to “normal”?

In some instances, there are resources available to help. You may want to check with Tennessee Disability Pathfinderfor assistance. In some instances, we may simply have to slog through a very difficult time together. I wish I had better, more comforting words to share, but I don’t.

Please, if you have questions or concerns about COVID-19’s effects on people with disabilities or their families, email me at janet.shouse@vumc.org. I may not have answers, but I will try to find them. Thank you, as always, for reading, and please take care.

Janet Shouse smilingJanet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

April 21, 2020

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