How Losing My Disability Benefits for Crohn's Disease Has Impacted My Health Care

At the beginning of 2021, the state retirement and disability program from which I receive benefits notified all of its members that effective January 1, 2022, they would no longer be able to provide members under a certain age with group health insurance. This applied to “regular” retirees and disabled retirees alike. Even though we paid a premium that was deducted from our monthly benefits, the cost to provide health coverage to all of us had become too prohibitive. Instead, we all would have to buy health care plans through the Affordable Care Act (ACA). The program also said that in fall 2021, we would be contacted by a benefit counselor who would help us through the transition and assist us with choosing health care plans that could best meet our individual needs. I was terrified. I have Crohn’s disease and specifically applied for these disability benefits because I desperately needed good health insurance.

Twenty years ago, I was working for a regional government planning agency. My office manager, who had done some research on my behalf, discovered that after 10 years of service as a public employee of the state, I was eligible to apply for the disability benefits provided by our retirement plan.

This was my first job out of college, and unfortunately, during many of those 10 years, my Crohn’s disease was at its most severe. I spent as much time in the hospital as I did at work. My supervisors and coworkers did everything they could to keep me employed, allowing me to work from home for extended periods of time so that I could continue to retain my health insurance coverage. They even made an attempt — albeit unsuccessfully — to donate some of their sick days and vacation time to me.

My work situation was becoming untenable. I was only in my early 30s, and I had determined that my actual monthly monetary benefit would be small. Still, I jumped at the chance to have good health insurance without the intense pressure of trying to maintain my employment status. Therefore, when I was approved for health care benefits shortly after I applied, to say I was relieved would have been the understatement of the century.

I’ve had Crohn’s disease most of my life. I was finally diagnosed at age 10 after my mom decided to bring me to one of the nation’s top medical facilities — which just so happened to be located about 90 miles away from where I lived in Northeast Ohio. The health insurance provided by my disability plan was a good PPO plan that allowed me to continue to receive my care from all of the specialists who had always been part of my medical team. Although my disease had become quite severe, I had the utmost faith in my doctors. They were not only some of the best in the world, but they also had known me for most of my life. This gave me a strong sense of security and peace of mind because I knew that no matter what might happen, I would have great care.

My peace of mind would eventually erode, however, as I discovered that the health care plans offered to me through the Affordable Care Act are not PPOs but are HMOs instead and that there is a big difference between the two types of plans. Neither my specialists nor the hospital where they worked accepted any of the HMOs that were available for me to choose from. I found the same to be true of another well-known hospital that is also located in Northeast Ohio — in close proximity to the one I had been going to. Furthermore, I found that all of the HMOs I could choose from were extremely limited in their coverage geographically. When I searched for any kind of in-network provider, be it a gastroenterologist (GI) or a primary care physician outside (PCP) of a 40-mile radius, I was out of luck. It became disheartening quickly. But outside of finding a full-time job, this health care plan was my only option.

After doing some extensive research on gastroenterologists in my area and talking with my doctors, I finally found someone who I felt fairly confident seeing. This particular GI doctor had actually been on staff for a few years at the hospital where I had been receiving my care. Fortunately for me, when he left there, he started a practice close to where I live, and he’s proficient at advanced endoscopic procedures — which is an extremely important need of mine. More importantly, though, he was covered by the majority of the HMOs that were available for me to choose from.

In early November 2021, I had a session with a benefits counselor who thought there was a mix-up after talking to me. They called a supervisor and was shocked to learn that the program was indeed cutting off health insurance to its disability retirees because the program could no longer afford it. After about three hours on the phone together, the benefits counselor and I found a health insurance plan that met all of my basic needs for in-network providers — including the new GI doctor, my primary care physician, and my gynecologist. All of my necessities were also covered under the plan. However they were covered at different tiers than before — which meant a co-pay increase — and many of them now required a pre-authorization every eight weeks to every six months. I have come to learn that the pre-authorization process can be time consuming and frustrating. But so far, I have not gone without anything I need.

Ultimately, I’m grateful that the ACA exists and that my disability program provided me with the tools to help me choose the best health insurance plan available to me. However, I specifically applied for these benefits because my retirement plan offered them, agreed that I am disabled, and thus agreed that I qualified for the benefits. I’m not a “regular” retiree — I am a disabled retiree. Therefore, I need the kind of health insurance provided by a group plan — a PPO. I need the kind of health insurance that doesn’t limit people from seeing specialists or going to hospitals outside of some arbitrary geographical boundary.

I would have hoped by now, 20 years on, that health care in America would have gotten far better for disabled people, not worse. We have come so far over the years and are far more inclusive of disabled people than in the past in so many ways. Health care is so important to us, yet we are so far behind in this regard.

Personally, having my options limited to such a degree was an extremely daunting prospect for me. The change in coverage was significant and, although my coverage is sufficient for now, in the future, it may impact the level of care I receive, the medications I am able to afford, and my quality of life. I don’t claim to have the solution to this problem, but it seems to me that something is really wrong when disability programs can no longer afford to provide the level of quality health insurance plans that its recipients truly require.