Many Americans regularly suffer unfavorable decisions that affect their health benefits, but Anna Landre has proven herself to be a formidable opponent to what many see as a dysfunctional health care system.
The 21-year-old, who was valedictorian of her high school, has earned strong grades during her three years at Georgetown University while living with a significant disability — spinal muscular atrophy. I wrote about Anna last year and have kept up with her. Her story is included in my new book due out next January, Get What’s Yours for Health Care – How to Get the Best Care at the Right Price.
Landre has been coping with the genetic disorder since birth and relies on extensive on-site help. She has a health aide with her 16 hours a day — 10 hours each evening and six hours during the day. She needs help with all daily activities and often requires assistance at night to improve her breathing and move her to a more suitable position in bed. She has been able to live on campus and attend classes, aided by a motorized wheelchair.
Even with on-site help for much of the day, trying to lead a semblance of a normal life is challenging. Her course work had to be rearranged because she can only attend classes when an aide is present. “It would be nice to be able to have someone with me all the time,” she said in a phone interview. “God forbid that I could go to the bathroom whenever I want!”
The company that administers Medicaid on behalf of New Jersey, Horizon NJ Health, informed her in 2018 that it would reduce the number of weekly hours of care covered by her insurance from 112 to 70. Cutting the hours of care by more than a third threatened to end Landre’s dreams of getting a college degree and, later, leading an independent life.
The company told Landre the change stemmed from periodic nursing assessments it does to evaluate needed benefits. Using a benefits evaluation tool created by the state, Horizon NJ Health found Landre needed less than 10 hours of help a day.
Landre said neither the insurer nor the state ever explained to her why her hours had previously been approved but then cut without any change in her condition. “I thought we all had agreed upon this amount of help throughout my college career, and that the insurance company and the state and me – all three parties – had agreed that this was going to work,” she said.
“They have these set ideas about what disabled people should and shouldn’t be allowed to do.”
Landre appealed the reduced coverage. A state administrative law judge reversed Horizon’s decision, but the New Jersey Department of Human Services, which oversees the state’s Medicaid program, then reviewed the judge’s decision, as required by law. It agreed with the company and said in late May that Landre’s benefit cuts would take effect.
The New Jersey Department of Human Services, which oversees the state’s Medicaid program, “didn’t care that I couldn’t live independently on the amount of hours that their evaluation tool kind of spit out,” Landre said. “It was really awful trying to fight that fight.”
Landre recalled that during her appeal, the insurance lawyer asked if she brought her aide to parties where she would drink. “And I said, ‘Absolutely not!’ But I was also thinking in the back of my head, what if I couldn’t lift a fork to my mouth to eat, or I couldn’t drive my own wheelchair and I did need someone to go to social events with me?” Landre said. “Would that somehow make me a criminal? They have these set ideas about what disabled people should and shouldn’t be allowed to do.”
A Horizon spokesman declined to discuss Landre’s case beyond saying that the company did not make New Jersey’s rules but simply carried them out in its coverage decisions, noting that the state had agreed with its decision to reduce her covered hours. A spokesman for the state said it did not comment on individual cases.
Once she was informed of that decision, Landre began developing a social-media campaign to fight back against adverse health insurance decisions.
The tweets generated an outpouring of support from the Georgetown community and disability rights groups. They also led to news stories in the Asbury Park Press, NJ.com, Forbes, and other online outlets. The insurer quickly reversed its position.
Landre said the terms of her revised agreement prevented her from discussing specifics. But she will be getting 16 hours of daily help during the rest of her college career.
The downside, Landre said, is that her success is specific to her case and does not change insurance coverage rules for other people with disabilities. Increasingly, knowledge-based jobs can be filled by people with disabilities, she said, but not if outdated insurance rules apply coverage restrictions that no longer reflect technological and workplace realities.
But Landre’s situation could serve as an example to others denied coverage. A government report from 2011 estimated between 39 percent and 59 percent of coverage denials are overturned on appeal.