Illinois residents share experiences, ideas to improve the state’s Medicaid program

October 12, 2021

By Bailey Williams

For more than 50 years, Illinois Medicaid has offered millions of residents access to health insurance for free or reduced rates. Illinois Medicaid is the largest health insurer in the state, providing coverage to about 25 percent of the state’s residents including people living with HIV, working families, older adults, people with disabilities, pregnant residents and low-income kids and adults. Many of the clients AIDS Foundation Chicago (AFC) offers case management, housing and other essential services to rely on health insurance through the Medicaid program.  

Since the program offers coverage to many of our clients, AFC joined Legal Council for Health Justice, EverThrive Illinois and the Shriver Center on Poverty Law to assess how the program is working. To do so, we spoke to community members insured under the program and asked them how Illinois Medicaid has helped them, what barriers have they faced and how would they like to see the program improve.  

Residents shared they’d like to see more appointment availability, transportation to and from appointments and expanded coverage that included more dental procedures and needed supplements. You can read more about each community member’s experiences with Illinois Medicaid below.

Derek wants to improve appointment availability and scheduling 

Derek Wimes, a 61-year-old Black Chicagoan, said for the most part, Illinois Medicaid has addressed all of his health needs. Although he hasn’t needed to use his insurance all that much in the more than ten years he’s had it, Derek hasn’t had a problem accessing health care when needed. For instance, Derek had Hepatitis C at one point. He was able to get an appointment for it and eventually acquire the needed medicine to cure it.  

In one incident outside of his normal ease using his insurance, Derek was denied health care to treat a bunion on his foot because he smoked cigarettes. The medical provider did not provide an explanation or any details around why smoking would be a reason that he couldn’t receive care. After that appointment, Derek struggled to find help for his foot concern. He eventually went back to his primary care doctor for another referral to a different foot specialist. 

Despite that one-time hiccup, the one thing that Derek said he’d like to see improved is appointment availability and scheduling. 

“Appointments are set too far in advance,” Derek said. “If you have a health issue, you have to wait a month to get it addressed. For instance, if I got something going on with me now, it’s not as if you can go to a local medical office (today). You’d have to go to the emergency room to address those issues.” 

Not only does appointment availability impact the speed at which a health concern can be addressed, it also increases the chances that you’d forget about the appointment and miss it as a result, Derek said.  

Outside of appointment scheduling, Derek said using Medicaid has been just fine. 

Earl wants transportation to and from appointments 

Earl Harris, a 62-year old African American Cicero resident, said he had mixed experiences with Illinois Medicaid, which has provided him health insurance for more than 10 years. On one hand, the provided insurance allowed him to undergo a spinal surgery that enabled him to walk again. 

“(Illinois Medicaid) helped me with a spinal surgery and that was a blessing for me,” Earl said. “I could hardly walk. If I didn’t have the insurance, I wouldn’t have had anything.”

Still, Earl has had several challenges with Illinois Medicaid, especially after they shifted his insurance plan from CountyCare to Blue Cross Blue Shield of Illinois. When Earl was informed that his insurance plan was changing, he received a letter saying none of his benefits and service coverage would change. Despite this, Earl discovered that Blue Cross Blue Shield wasn’t accepted at the same providers his former plan was, including the closest hospital to him. As a result, Earl has to travel sometimes upwards of two hours on multiple forms of public transportation to visit the providers covered under his new plan. 

Earl said Illinois Medicaid should provide transportation to and from appointments. Under CountyCare, his plan said that transportation was an option, but Earl was never able to use those benefits despite calling multiple times. Ensuring transportation options would support Earl, who needs to have another spinal surgery done to support his mobility.  

In addition, Earl said he has had difficulty with the automated messaging system his insurance plan uses. When Earl has a question about his benefits or needs help finding a provider, he calls a 1-800 number provided on his insurance card. Rather than a person being on the line, Earl first talks to an automated voice that asks a variety of questions. Often, the machine asks questions faster than Earl can process them and respond. The experience is extremely frustrating and at one point led Earl to temporarily give up seeking help for the medication that he needed.

Earl said he wasn’t alone in that experience. Friends and neighbors have also given up and decided not to seek the health care they needed because of difficulties with the automated messaging. It would be helpful to have a person on the other side, rather than the automated machine, he said.

Tommie wants more health procedures covered, including necessary dental work 

Tommie Sein, a 58-year-old Black Chicagoan, said Illinois Medicaid has failed to support all of his health needs. For several years, Tommie did not receive his insurance card, which prevented him from receiving health care from many medical establishments.  

Hospitals and clinics typically use an individual’s insurance card to make sure you have active health insurance that will cover the services you are requesting. Often, the information on the card is required to book the appointment. 

In the last two years since he’s finally received his insurance card, Tommie has been able to secure appointments for needs like restoring full vision to one of his eyes. Still, that appointment was set for two months after he called seeking care. This was typical, Tommie said. 

In the eight years since he’s had health coverage through the Medicaid program, appointment availability has felt inadequate, he added. If a need arises that requires a doctor’s appointment, there are frequently no immediate appointment dates available. Instead, Tommie must wait weeks to months to get his health concerns addressed. Similarly, Tommie said medications he orders are often slow to arrive. 

Another issue Tommie found burdensome is Illinois Medicaid’s refusal to cover necessary dental work.  

As an older adult, Tommie said he needed to have teeth pulled and replaced to support his ability to eat. Tommie said his insurance will not cover the procedure, keeping needed health care out of reach. 

“Why can’t they come up with a way to cover all health treatments?” Tommie asked. “You have folks who need to have these treatments done.” 

Melissa, a Chicagoan living with HIV, feels Illinois Medicaid has met her needs

Melissa Knight, a 52-year-old Chicagoan living with HIV, said Illinois Medicaid has met most of her needs. In the more than 15 years of receiving health insurance through the program, Melissa said needed surgeries and medications have all been covered fully by the program. She has not experienced any barriers or challenges accessing services, finding doctors or scheduling appointments. She also said she has not experienced any stigma in using her benefits. Overall, the insurance program has provided all of the resources she needs to remain healthy. 

“(Illinois Medicaid) is doing really good for me,” Melissa said. “Everything I need from doctors, they pay for. All of the medications I get filled are paid for.”

The one thing Melissa would like to see improved is the types of nutritional shakes Medicaid covers. As someone who is underweight, Melissa would like her insurance plan to cover Ensure’s nutritional shakes. Under her current insurance plan, she would have to pay for that brand out of pocket, so instead, she uses a brand she doesn’t prefer. 

Joseph is satisfied with Illinois Medicaid 

Joseph Bowman, a 65-year-old African American Chicago resident, has had Illinois Medicaid for at least 30 years. In that time, he said the insurance program has met all of his health needs. He hasn't experienced barriers or challenges in accessing services or scheduling appointments. 

“Anytime I have any medical problems or issues, I’ve always been able to get them addressed promptly,” Joseph said. 

Joseph said the program has also enabled him to get his medication consistently. He said that’s one of the most important aspects for him when it comes to health insurance coverage.  

When asked if there was anything he’d like to see improved, he said there was nothing he could think of.

If you’d like to share your experience with Illinois Medicaid through video for a chance to win a $100 gift card, click here.


Categorized under Illinois and Inside Story.

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