Is it a Tree or Four Elephants?
One of my all-time favorite Sesame Street characters—even now—is “Lefty”, the fast talking, trenchcoat-wearing street salesman. In one episode, Lefty—“Psst…hey, Bud…”--approaches Ernie with an offer to show him a picture of (look left, then right, then left again)…”elephants”. If you’ve seen the skit from this longlasting children’s TV show, you will remember that the picture is a simple optical illusion. At first glance, it is a picture of a weeping willow tree with leaves, birds and some flowers. Lefty challenges Ernie: “If I can show you the elephants in this here picture, will you buy it for a nickel?” Ernie agrees and Lefty proceeds to show him how the tree branches, leaves and birds, viewed correctly, serve to outline empty spaces, shaped like four—you guessed it—elephants. Once you’ve seen them, they are obvious. Without violating copyright, this image is the best I can do…. If you need a laugh, I recommend you watch the whole skit.
Walking young adults with less obvious or even “invisible” disabilities, through the process of applying for Social Security and Medicaid benefits, requires an approach a lot like Lefty’s. Typically, with regard to our young adults with disabilities, whether in school or in the community or, especially, in advocacy contexts, we work with them to make all their talents and abilities—what they can do and achieve—stand out. In other words, we want the world to see the graceful branches and lively, bright green leaves of the tree and the cheerful accents of color that are the birds and flowers. So:
“My daughter is so outgoing. She knows the names of everyone at her internship site—even those staff who only come in occasionally.”
“My son is so good with detail, he gets the inventory count right the first time, every time.”
“My brother knows so much about music, he can tell you the name and background of every instrumentalist in every major hip-hop band.”
“My sister got a standing ovation when she talked at the advocacy convention about her struggle to get a job.”
“My friends at L’Arche live a remarkable theology of mutual relationship and inclusion.”
When you’ve worked in a disability-support field for any length of time, you have become a master of seeing how much is there in these young people. Like Ernie, you see the tree. So it’s a hard shift when you are talking to someone who is the gatekeeper to benefits and supports, and you have to convince that administrator to see what’s not visibly there at first. People with disabilities have amazing skills, potential and character. And some of them also have functional deficits that may be the size of elephants, when it comes to supporting themselves with complete independence. With supports, they can work and impact their communities for everyone’s betterment, but they need to qualify for the supports first.
The main reason that young people get rejected for Supplemental Security Income (SSI) and Medicaid is that the Social Security Administration is not convinced that the applicant could not, under any circumstances, work at any job for which they are qualified and earn more than $1,220/month (2019), which amounts to a 40-hour week at minimum wage, at least in the greater Chicago area. If you know as the parent, sibling, case manager or guardian that this is honestly impossible, at least at this point in time, then the onus is on the applicant and you to prove it.
Start by considering what jobs the person could possibly qualify for by reason of experience and education. Then consider all the job requirements and whether or not the applicant for whom you are advocating could meet them. For example, most typical 18-year-old students could work at a fast food restaurant. For this kind of work, you need to be able to stand and move throughout the whole shift. You need fine motor coordinating to be able to cut ingredients and assemble sandwiches. You need to time cooking food. You need to remember how to prepare a lot of different orders. You need to be able to switch rapidly and often continuously from greeting customers to getting food to making change to cleaning up. You need to be able to handle noise and crowds at a fast pace. You need to toggle from the counter to the drive-through and to hear through the headset. You cannot be particularly sensitive to strong scents or cleaning chemicals. You have to tolerate a uniform that may be uncomfortable and you have to keep your cool when customers lose theirs. You have to problem-solve in the moment and know when to call a manager.
Maybe the person applying for benefits has the coordination to cut and assemble but not at the needed speed or for a whole shift. Maybe the person will need to sit down more frequently. Maybe s/he can track cooking time easily at home, but won’t be able to hear the timing buzzer with a lot of background noise. Maybe s/he can handle regular orders, but will have trouble processing special requests. Maybe s/he can switch from one task to another, but needs more transition time than rush hour will allow. Maybe s/he cannot be around or handle certain chemical cleaners even with gloves. Maybe s/he cannot wear the headset because of hearing aids. Maybe s/he can tolerate the uniform, the flashing lights, the music soundtracks or the kitchen heat only for so much time. Or maybe s/he would become completely flustered and unable to respond if a customer complained angrily.
Please don’t misunderstand this approach. I am totally, 100% in favor of people with disabilities working. I am also totally, 100% in favor of them getting the benefits they need so that they have the safety net they need to work. You do not have to convince the Social Security Administrator that the applicant cannot work at all. However, you do have to convince them that the applicant cannot, at this time, work at that $1,220/month level that Social Security calls “Substantial Gainful Activity” (SGA) and which is a key criterion to receive disability benefits as an adult.
You can further support an application by making a detailed outline of the applicant’s day from the moment he or she wakes till the moment he or she retires. List out every task and how much help—whether it be physical assistance or verbal prompts—the person needs to complete each task in a timely manner. Finally, make another list of every atypical expense that the person would incur if s/he held a job and that would not be covered by insurance. Does the person need special clothes, shoes, technology, therapy, medicine, transportation, direct personal assistance or anything else to prepare for, get to and engage in the work on a sustained basis? You want Social Security to know about these, because even if the applicant could work at or near the SGA threshold, these types of expenses (if approved) could be deducted before earnings were counted for Social Security eligibility.
At the end of the same Sesame Street skit, Bert walks up to Ernie. Ernie quickly attempts to repeat the same challenge on Bert that Lefty imposed on him. Ernie’s very sure that Bert will only see the tree and not the elephants but—surprise!—Bert sees the elephants right off. As an advocate for the young adult with disabilities who needs benefits, your job is to make the Social Security Administration, like Bert, see the elephants clearly and quickly.