Did you know your insurance company can change and even revoke the care you’re getting? What you think is covered can be changed without warning. That’s just what happened to my 48-year-old son, Gene, last December.
In 2001, Gene was diagnosed with bulbar-onset ALS. He came to live with me in 2006. Gene is ventilator dependent and only can move his eyes. He uses a feeding tube and catheter, and depends on registered nurses (RNs) for all his physical needs, 24 hours a day, seven days a week.
We’ve managed to keep Gene alive and at home because of this RN care. Without it, he would have to move hours away to an out-of-state nursing facility that accepts people on ventilators. Gene is doing well for someone with such a serious illness. His mind is completely alert and his heart is strong. My son always has been identified in his medical records as being “full code.” In other words, Gene opts to be resuscitated should his heart stop.
On Friday, December 7, at 4:30 p.m., I got a call from Blue Cross Blue Shield (BCBS) saying that Gene’s nursing care had been revoked. We still aren’t sure why they came to this decision. We do know that Gene’s 24/7 care is covered under BCBS’s hospice benefit. And we know that in November 2007, BCBS reviewed Gene’s case, and Gene said he still wanted to be full code. I guess bells started ringing at the insurance company at this time.
Gene’s care was turned over to Elder Independence of Maine (EIM), the state agency that administers home care through Medicaid. EIM provided Gene with only 28 hours a week of RN care. The remaining 140 hours each week would be covered by licensed practical nurses (LPNs) and personal support specialists (PSSs), who have lower levels of training than RNs. For example, they’re not trained in patient assessment, an essential aspect of caring for a person with ALS.
This meant training many new caregivers. My son only can respond to “yes” or “no” questions by moving his eyes. Removing the qualified caregivers who knew how to interpret his needs and make appropriate interventions was enormously stressful. Gene’s medical condition went into a downhill slide. It was a nightmarish time for all of us.
The appeals process
We immediately began the appeals process. This included identifying all the tasks the RNs did to keep Gene stable and out of the hospital. We also contacted the Maine Bureau of Insurance and the offices of our senators and governor. Each of these offices contacted BCBS to learn more about their actions.
While the appeals process went ahead, BCBS temporarily reinstated Gene’s RN coverage. This helped ease some of the awful tension.
By revoking RN care, BCBS put Gene at risk of needing institutionalization, which obviously would cost them much more in the long run. This was one of the main points we made in the appeals process.
After months of effort and with the input of Gene’s doctor, BCBS announced in February they were reversing their decision and approved RN coverage for the next 12 months.
As you can imagine, this was an enormous relief. Even now, when I think about what we went through because of some mysterious machinations on the part of the insurance company, I get very angry. Gene and I don’t want this to happen to anyone else struggling with one of the cruelest diseases on earth.
How to make sure Gene’s story doesn’t become your story
One of the best things you can do is have a detailed understanding of what’s covered in your health insurance policy. Don’t wait for the insurance company to tell you what’s covered.
Be aware of the requirements for eligibility. Because we still haven’t gotten a clear answer from BCBS about their actions, we only can guess at the reasons. We assume it was because Gene was listed as a hospice patient but still had full-code status. It’s possible they were clutching at any excuse to stop his coverage. But there’s nothing in Gene’s policy that states that full-code status precludes eligibility for hospice coverage.
As stressful and traumatic as this experience was, it’s ended, for now, with Gene’s services intact. This wouldn’t be the case had it not been for the efforts of our legislators, governor’s office, and Maine Bureau of Insurance. Without them, we could have been caught in the appeals process for a long time. We’re forever grateful for their support.
Sally Coffin is the mother of Gene Coffin, 48, of West Bath, Maine, a former construction business owner and commercial fisherman, with a wide range of interests and a passion for NASCAR. Gene and his mother want to create a ventilator-friendly care facility in Maine “where ALS patients can live with dignity and kindness in a loving, caring atmosphere and where friends and family can still be part of their lives and help them maintain as normal a life as possible.”
Aging and Disability Resource Centers
Center for Medicare Advocacy
Medicare Rights Center
National Academy of Elder-Law Attorneys
National Association of Disability Representatives
National Disability Rights Network (Protection and Advocacy)
Neighborhood Legal Services
State Departments of Insurance
National Patient Advocate Foundation