From Pain, Persistence
Over a decade ago, Ali Ingersoll was on a trip in the Bahamas when a dive into shallow water changed her life. Left a C6 quadriplegic from the accident, Ali has spent much of the last 13 years fighting for health insurance policy improvements related to disabilities and medical devices — when she’s not already tied up day trading, a career she began from scratch just three weeks before her accident.
Moreover, she has consistently dealt with significant complications from her accident, from stage 4 pressure sores to cervical cancer, spending time in hospitals and rehabilitation facilities in both the United States and China. But despite the veritable laundry list of challenges she’s faced — or perhaps because of it — Ali is the current Ms. Wheelchair America, having been crowned last year in Michigan, and remains as dedicated as ever to her work and advocacy.
Ali’s advocacy today is primarily focused on health insurance coverage for medical devices and procedures, and her expertise in the area supersedes that of many who work in healthcare and insurance. Of course, this was not always the case: as she learned all too quickly after becoming paralyzed from the chest down, there were not hordes of professionals rushing to provide her with the many medical items needed to live semi-independently as a quadriplegic. “You are your own self-advocate,” she often says. While she had (and still has) an incredibly strong support system of family and friends, Ali had to pick up the books for herself and take to learning everything about disability policy in Medicare and Medicaid.
“So many people [in medical rehab] are going home before they should, and the homes they return to are not equipped with the things they need to live,” she said. “I had to learn the hard way.”
What Ali ultimately came to realize was that she had a fight on her hands if she wanted to make a change. But after battling years of complications, surgeries and pain, insurance companies and the Centers for Medicare & Medicaid Services (CMS) seemed like comparably surmountable obstacles.
Seat Elevation: A Campaign for Coverage
Despite Ali’s optimism, which continues to shine through in her effervescent personality, the American healthcare system has proven itself to be a formidable foe in the fight to obtain coverage for medically necessary equipment. Much of Ali’s advocacy over the past few years has centered around a couple key pieces of equipment: seat elevators and standing wheelchairs. Each of these devices massively improve quality of life for their users, allowing far greater freedom of movement, independence, and safety.[PS1]
So, when in 2020 Ali was eligible for a new power wheelchair, it only made sense to request a chair with power seat elevation. The request was promptly denied, however, beginning a months-long battle that eventually culminated in Ali successfully obtaining a seat elevation chair after exhausting all possible appeals. There was one caveat, though: The decision to cover the new chair, according to her carrier, was not a precedent — in other words, the decision would not apply to others who would benefit similarly from the equipment. Though Ali was ecstatic to be receiving the equipment, the decision seemed less like a major victory and more like placating someone who refused to give up when most people would.
Unsurprisingly —it’s what she was arguing for all along! — seat elevation “has transformed my life,” Ali recently told AMRPA’s Medical Rehab Matters podcast. For her, it means tasks such as cooking, brushing her teeth and transferring from her wheelchair to her bed can now be completed independently and safely. In seeing how medically necessary a power seat elevator indeed is, Ali did not give up the fight but instead continued to be a part of the campaign to have CMS classify all power seat elevators as medically necessary — not just hers.
And last month, after years of battling, a massive victory for the disability community was declared. On May 16, 2023, CMS released its decision that seat elevation systems are medically necessary, meaning Medicare will begin to cover the equipment. Ali, along with organizations such as the Christopher Reeve Foundation and the ITEM Coalition, of which AMRPA is a member, had finally achieved what once seemed all but impossible.
The Fight Continues
Seat elevation systems, of course, are not the only medically necessary equipment not covered by insurance. Standing systems, a related technology that enables users to move to a standing position, are currently under review, and Ali is hoping for a result similar to the one recently announced for seat elevators.
Despite her cautious optimism, though, she is frustrated. “Standing systems prevent medical complications for wheelchair users, which saves money in the long term,” she said. The financial shortsightedness of the healthcare system continues to delay the process, she said, and in doing so, actively harms those who stand to benefit.
And yet, no amount of frustration or delay seems to deter Ali Ingersoll. She remains committed to her cause, and the communities she touches recognize that commitment. In August 2022, Ali was crowned Ms. Wheelchair America 2023, a title she currently holds and has used to spread awareness about the health insurance policy issues she works tirelessly to combat.
Ali has faced more hardship in her lifetime than most people will in 10, and yet with each obstacle she overcomes she continues to consider how she can prevent others from dealing with those obstacles in the first place. When no one would blame her for giving up, Ali presses on, and her tenacity has proven invaluable for the disability community.
The question isn’t if Ali will win — it’s merely a matter of when.