There is an old children’s joke: “What does an 800-pound gorilla get to eat?” Answer: “All it wants to.” Despite the well-documented fact that gorillas—even big male silverbacks—only seldom get much above half that amount in their body weight, the image is still pretty vivid. Mostly this joke and its answer are used with a negative connotation to describe a person or entity that has taken too much control of a situation. But if you are a person with a disability or with significant support or medical needs AND with a strong work ethic, YOU could be an 800-pound (very nice, I’m sure) gorilla. If the apparent conflict between your career growth and your Medicaid eligibility has become the elephant in the living room (Ok, I couldn’t resist the chance to mix zoo metaphors), then please take inspiration from a little known or little discussed Social Security provision.

I’ve talked in previous blogs about the Work Incentives that allow people with disabilities who work to keep their cash benefits during the initial stages of work. Some of the Incentives allow the worker with disabilities to deduct certain expenses and/or the value of accommodations made by an employer before their earnings are considered by Social Security, which maintains eligibility to even higher earning levels. Of course, at some point, even taking into account your allowable deductions, if you are consistently earning above what Social Security terms “Substantial Gainful Activity” or “SGA” ($1,220 for 2019) then your cash benefits will cease.
Often, though, the more important question concerns Medicaid eligibility. This is because as person with a disability you may have extraordinarily high medical and prescription bills, such that you need Medicaid as a first, a second, or even a third payer to cover them. Or, you may have significant personal care and support needs that are funded through a Medicaid Waiver and so require Medicaid eligibility to maintain funding. Your higher income from work may be enough to cover the general living expenses that you once paid with your Social Security cash benefits, but may not be nearly enough to cover what Medicaid pays.
It is not lost on the Social Security Administration that many people with disabilities rely on Medicaid to fund a high level of medical or personal services. And, the administration would very much rather that people with disabilities work and pay into the Social Security, Medicaid and Medicare systems than not work for fear of losing Medicaid. As a result, the Social Security Act include Section 1619, which is designed as a work incentive for people with disabilities who have ever received Supplemental Security Income or SSI. In fact, most people with disabilities, who receive Medicaid have also received SSI. This is because the eligibility criteria are very similar. In some states, the application process is one and the same and in many states, SSI eligibility automatically confers Medicaid eligibility.
Section 1619(a) allows people to continue receiving their cash SSI payment, even if their earnings are at or above SGA. This is because as that level, the 50-cents-on-the-earned-dollar reduction would not have totally reduced the maximum benefit of $771 (2019) to $0. But our focus here is on the more relevant Section 1619(b). Basically, this Section says that if:
a person qualifies for and received SSI and Medicaid for at least one month and…
continues to have the same disabling condition(s) and…
then loses eligibility for SSI even under Section 1619(a) because work earnings have reduced her/his SSI payment to $0 and…
her/his new earnings are not sufficient to replace Medicaid funding for medical and personal-assistance services that the person requires to live and work, then…
the person retains her/his Medicaid eligibility status.
According to the Social Security information for the general public, the person retains Section 1619(b) Medicaid eligibility until her/his countable income meets the threshold for her/his state of residence as listed in this chart: https://www.ssa.gov/disabilityresearch/wi/1619b.htm (2019 figures not yet available), because Medicaid is administered on a state by state basis. Limiting thresholds range from a bit over $27,000/year for my home state of Illinois and also Alabama, to over $53,000/year for very generous Minnesota. This is to say, the typical adult gorilla weighs between 150lbs (small female) to 400lbs (large male). But what if your medical- or personal-care expenses—paid before by Medicaid—are way higher than you could pay from your allowed, up-to-the-threshold earnings? In other words, what if YOUR Medicaid expenses are the 800-pound gorilla?
Well, it just so happens, if they are expenses for legitimate, because-of-your-disability, cannot-live-or-work-without-them, need-Medicaid-to-pay-for-them, medical or personal attendant services; then, like the 800-pound gorilla, you can have a personalized threshold that accommodates YOU. So, for example, if you live in Illinois, where the most recently documented threshold is $27,462/year and have a disability and actually need $100,000 to cover both your basic living and your Medicaid or personal care services; then, you can request a personalized limit of $100,000.
Despite their rather fearsome appearance, gorillas are often peaceful, shy, and even gentle creatures. Perhaps the 800-pound gorilla does not deserve its negative connotations. Perhaps, in some cases, the 800-pound gorilla just needs more flexibility to be successful. And as unlikely as it seems, that little-known aspect of the Social Security Act, that Section 1619(b) can help you tame both the gorilla and the “What-if-I-work-too-much?” elephant in the Social Security waiting room.