True stories* from Americans as they navigate our country’s healthcare system.

The Quest for Insurance

I bought my own health insurance as an individual before the ACA went into law. Insurance premiums, co-pays and deductibles were all increasing at an alarming rate each year. Before the ACA there was no easy way to get price quotes or determine coverage from competitors. Actually changing policies was out of the question because I would not be covered for pre-existing conditions until I met their time limit. I also lived in fear of getting ill and being dropped by my insurance company. If I lost coverage and was ill, I would quickly bankrupt my family and we would lose our home. My backup plan was to divorce my husband and sign the house over to him. My husband was dismissive of this but I was serious. Once the ACA Marketplace opened it was wondrous! I could compare plans and coverage! I could not be rejected! Best of all, it provided free market competition for the insurance industry resulting in premiums that were less than those I was paying! I could keep my same plan and pay less. I didn’t because there were other plans with lower premiums, lower co-pays, lower deductibles and higher patient satisfaction. ACA also gave me free mammograms, colonoscopies, annual exams, birth control and coverage for mental health services. Bottom line is that the ACA provided much better healthcare at lower out of pocket costs.

Medicaid is Crucial for Disabled Children and Their Families

I have a child with disabilities. Due to the diagnoses, they qualified for Medicaid to cover costs of services. Medicaid has been a lifesaver. When our child was of school-age, they received Wrap-Around Services, PT, OT, Therapeutic Social Support, psychological counseling and psychiatric care. They were evaluated every four months to check on their progress and identify new areas that needed remediation. A detailed, specific treatment plan would be created. Most of this coverage would not be offered by a traditional healthcare plan. This is why Medicaid is so crucial to the disabled population. Without Medicaid, having a child with special needs would bankrupt most families. Without Medicaid someone, most likely a parent or grandparent, would need to provide unpaid care.

It is vital that Medicaid is preserved and strengthened to help vulnerable individuals. It may sound like disabled school-age children get extensive services but in reality it is only what is necessary. There are stringent requirements and much paperwork is required to justify each service; they are not easily approved. If Medicaid funding is reduced, disabled school-age kids will suffer, their families will suffer, and school districts will suffer.

Services for school-age children are provided by county-based agencies, which in Chester County are very good. Once the disabled have aged out of school-age services, there is not much for them and they become isolated.

Our adult child is on Medicare and Medicaid. As an adult, our child had to apply for an OBRA waiver, a Home and Community Based Waiver. In Chester County, the waiver is presently managed by the Cerebral Palsy Association of Chester County (CPAofCC). They are working to ensure that disabled adults are less isolated. As a service, CPAofCC has started a group called ‘Storytellers’. It has become a vibrant community of disabled adults pursuing creative outlets and is the bright spot of our adult child’s monthly schedule.

When Insurers Make Health Decisions

I want to start to laugh every time I hear someone say that they don’t want the Government between themselves and their doctor. Our present system has something much worse. We have a for-profit insurance company between ourselves and our doctors. Your health insurance company, not your doctors, decide on your treatment and how long you can stay in the hospital.

In 1996 my husband was in an automobile accident. He was diagnosed with a spinal cord injury at C5 and a closed skull traumatic brain injury. In the Neuro-I.C.U. he was placed in a halo attached to the bed. The halo is a metal ring that encircles the head and is held in place by 4 screws that go into the skull. Once he was released from the Neuro-I.C.U., his halo was braced by four metal bars that attached to a rigid plastic vest and he was moved briefly onto the Neuro floor. A nurse entered in a panic, saying that he had to be moved. I watched as they transferred my naked husband into a wheelchair. He was taken out into the hall and people started screaming. He was quickly returned to the room, where I was still gathering his things. We were informed that he needed to be covered. Since my husband was in a halo, he could only see straight ahead and with very little feeling in his body, he had no idea what, if anything was on him.

A social worker came to collect me and as we were walking, she explained to me my husband’s condition. We stopped at a glass partition. There was a woman on the other side having a fit and physically abusing a patient file. She appeared to be snarling at it, glancing at a page and then quickly ripping it out of the way to see the next page. The social worker asked me if I knew who she was. I replied that I did not. The social worker informed me that she was from my husband’s insurance company and was reading his file.

This was frightening. I wish everyone could see such a scene. I wish my husband’s insurance company would feature it in all their commercials. This is the reality. Once my husband was out of I.C.U., his insurance company made all the decisions and not his doctors. The insurance company only recognized and treated the spinal cord injury. They denied all services for the traumatic brain injury. We appealed their decisions to no avail, because when you contract with the health insurance company you agree that all differences will be settled through arbitration. The arbitration panels are made up of health insurance industry persons, so in all appeals they agreed with the decision of the insurer.

*Stories compiled by an ICC Member.