I am a Victim of a Broken System

Living with a severe disability is scary, but if you’re also low-income and living in the state of Illinois, life can be downright terrifying. As a C-5 quadriplegic, I must rely on the competency and professionalism of the government to ensure my extensive healthcare needs are covered.

I’ve been a Medicare-Medicaid recipient for many years, and I am well aware of how delicate this system is — one little mishap or communication breakdown and my well-being is jeopardized. Therefore, when a medical supplier notified me last December that I was going to be charged for a crucial monthly order because my Medicaid was “inactive,” I was overcome with horror.

Few things are more vital to my well-being than health insurance coverage. I take medication four times a day. I have life-sustaining medical supplies delivered monthly. I’m prone to urinary tract infections, which require lab tests and antibiotics. I’m highly susceptible to colds, the flu and hypothermia during the winter months. At times my wheelchair needs maintenance and repairs. I know from past experience that resolving this issue will be a lonely, emotional and all-consuming process.

There is a single consistency with state-run departments: They are nearly impossible to reach via phone. Nonetheless, I made calls to Medicaid and the Department of Human Services (DHS), including my local Champaign office and the Skokie office where my case had previously been handled. Medicaid couldn’t assist me because I no longer had an active case, and both DHS office phone systems went straight to voicemail. The Champaign office got back to me a few days later, but I missed the call which set off the cyclical routine of calling and leaving voicemails. When I finally connected with the Champaign office (the Skokie office has yet to return my urgent messages), I was given three different reasons for the swift cancellation without notice. Reason One: I failed to submit my re-determination forms. Reason Two: I became eligible for Medicare, and needed to re-apply for Medicaid under the AABD program. Reason Three: There was a computer glitch.

Scenarios one and two were immediately debunked because I submitted my forms and I’ve been eligible for Medicare for many years. Therefore, my life was hanging in the balance due to a technical defect. This healthcare system isn’t just delicate; it’s broken.

I tried for about a week to see if anyone at DHS could remedy this egregious error, and I contacted both my state and U.S. representatives, but no one could give me the help I needed.

My only solution was to re-apply for Medicaid, but it takes up to three months to be reinstated. Without insurance, I can’t afford my critical medical necessities as it is. If I would become sick and need to be hospitalized, I wouldn’t survive. I tried to explain my dire situation to anyone I spoke with, but my pleas fell on deaf ears.

My terror level increased a month later when I received a notice from Social Security announcing the state would no longer be covering Part B Medicare due to my inactive status. This was a devastating blow because my disability is my only source of income. Nonetheless, when my check arrived two days later, $134 had been garnished. After another round of phone tag with DHS, I was told to re-apply to the Medicare Savings Program to fix this issue, and approval would take up to six months. SIX MONTHS?! This was an unfathomable case of double jeopardy. Not only was the state endangering my life, it was threatening to bankrupt me at the same time.

I finally decided to contact the office of my former state representative, Kelly Cassidy, where I was a student intern in 2014. I explained my situation to my old boss, and within a matter of days, the issue was resolved. I was elated, and breathing easy for the first time in months, but based on this experience, it seems as though low-income, disabled recipients are expendable. If we start dying off, will the state finally take notice of us? Or would they even care?


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