Acute spinal cord injury is mostly the same as it’s always been — crazy mixed up confusion, anxiety, shock, grief, regret. Rehab is shorter than ever. Doctors still say “you’ll never walk again,” but not as often as they used to; most at least know that they just don’t know. Physical therapy is more active and less compensatory, a nod to more aggressive therapies that have helped many gain significant health benefits, and even motor function. The psych component remains woefully underserved.
It’s still really easy for anyone to join the SCI club. You can jump in, as Ashton Fritz did, or get slammed in, as Edie Perkins did. Of course, neither of these young Californians gave life-changing trauma a moment’s thought — until it showed up. But they’ll tell you now how real it got, and how fast. It’s the most expensive, annoying, unfair situation, and the least exclusive group ever.
We will follow Fritz and Perkins, both spinal cord injured in 2017, as they navigate total chaos toward manageable chaos. I don’t know if you’d say they’re rehabbed, but they are home and settled now, Perkins working and Fritz back with his family and in college.
To get where they are, both had to confront the limits of their health care insurance. They did so in very different ways, but in the end they both used the powers of a networked SCI community, peer support and the kindness of strangers to mostly get what they needed. Here’s how.
Edie Perkins’ Story
Perkins was toned and fit, a competitive marathon runner, a badass distance cyclist. She once rode from Oregon to New York, on a whim. She had recently located to the Los Angeles area from New York City, where she’d spent 20 years in children’s book publishing.
On the morning of April 20, 2017, Perkins had just begun a bike ride, heading out from her house in Eagle Rock toward the Angeles Crest Highway. A woman driving an SUV was blinded by the sun and ran head-on into her. She spent 10 days in the trauma unit at Huntington Hospital in Pasadena with 11 broken ribs, multiple spinal fractures and paralysis at T5.
Today Perkins is OK and continues to get stronger. She’s working, staying active, still figuring this new life out, but upbeat and grateful. Her story is about how getting no advice and no information led to poor rehab, the need for paying out of pocket for good rehab, and eventually getting great community support and a decent homecoming.
Not ‘So Basic’
Perkins wanted to stay at Huntington for rehab; it’s a nice place even though it lacks specialization in SCI care. There was talk about flying her to Spaulding Hospital in Boston, where she’d grown up, or to Craig in Colorado. Neither of those places, Perkins would learn, was in her insurance network. She was fitted with a halo brace due to her complex injuries, and that complicated travel. Her physicians advised her to stay local. Indeed, doctors at Huntington urged her to go where the insurance dictated. “They told me the first month was so basic — teaching transfers and building strength — that there was little difference in quality between rehabs.”
Wrong! There is a huge difference between good and mediocre rehab.
Perkins’ insurance was purchased on the Affordable Care Act marketplace, yes, Obamacare. She had a silver level Blue Cross HMO. Not the worst plan, but clearly not the best when it comes time to pay for trauma care, but of course nobody looks at the back-end coverage for such things as rehab days or durable medical equipment benefits. Blue Cross assigned Perkins to Allied Pacific, an independent doctors group that has contracts with a handful of area hospitals, none of which has an accredited inpatient SCI rehab unit, or a board certified SCI doctor. She ended up being designated to Garfield Hospital, 10 minutes south of Huntington.
In my Southern California edition of SCI: First 90 Days, I rank rehabs in the region, based on accreditation and volume of spinal cord injuries. Garfield is in the bottom tier — lowest volume, no accreditation. Garfield’s Yelp ratings, take ’em or leave ’em, are not even lukewarm. Moreover, Garfield’s care is rated poor by the California Office of the Patient Advocate. Would you send your best friend or your mother to this place? Not if you had a choice. But rarely will anyone tell you that you might have a choice. Most people are so freaked out in the trauma hospital setting that challenging an insurance company decision just doesn’t happen [see Insurance Appeals].
Perkins and her family, blinded by the enormity of her injuries and her doctors’ misleading advice, didn’t know about Garfield’s rankings, or about insurance in general. Could they have appealed? Yes. They could have made a strong case that Garfield lacked expertise to handle a complex injury and that Blue Cross was obligated by law to provide for proper medical attention, even if outside its network.
“The plan to send me to Garfield didn’t feel right,” says Perkins. “We asked about other places. My parents visited California Rehab Institute and Casa Colina, both nearby, and much more familiar with SCI. But it was ‘no no no’ from the insurance company.”
Alone and In the Dark
At Garfield, Perkins was the only person on the unit with a spinal cord injury, and the only one in her age group. She had a private room, ate meals in her bed. There was little social contact with other residents, most of whom were elderly and had had strokes.
Some of Perkins’ nurses didn’t speak English. “The staff at Garfield, they cared, they wanted to help me. Even though they were nice, they didn’t seem to have experience with some basic things about SCI.”
You’d think a rehab hospital in a major metro area would have the rudiments of neurogenic bowel and bladder care down. Perkins said she was transferred to a commode, expected to urinate on her own, and to move her bowel unaided. “They thought I would just start pooping, like, ‘Here, sit on this commode every morning and try to get regular.’”
Perkins wondered if her urologist had any SCI-specific training. “He kept getting mad at me for having to pee so much at night. This required a nurse to cath me, which they often neglected to do. In the morning I would have 1,000-plus ccs of urine. The doctor told me not to drink so much water. I learned later that people with edema would retain a lot of fluid in lower extremities, and therefore urine output increases at night. Seemed strange that a urologist wouldn’t know that.”
The urologist also put Perkins on antibiotics in advance of her having any symptoms of infection. This made her nauseated and interfered with physical and occupation therapy.
Getting her full allotment of therapy time was another struggle. “Usually what would happen is the nurses would neglect to get me up and ready for PT/OT. They would leave that to the first therapist to appear,” says Perkins. “It would infuriate me. We’d waste a whole session with the PT changing my diaper, putting my pants on and getting me into the chair. So I made a stink. The administrators responded well enough to my pushiness. But it was still hard to get nursing to comply.”
Perkins’ HMO approved three weeks at Garfield, but because she was still sporting the halo, which limited much of her mobility and therapies, she got extended to six. When Garfield deemed her rehabilitated, she wasn’t close to being ready for home. The HMO approved Perkins to enter Casa Colina’s Transitional Living Center — not full rehab services, but good prep for getting back home.
To get her ready for Casa Colina, Perkins and her family paid out-of-pocket for more acute rehab: two weeks at California Rehab Institute. It was quite expensive, but “definitely worth the money,” said Perkins. “I got a lot of attention there. My doctor gave me a half-hour lesson every day. I learned about autonomic dysreflexia for the first time, and about bowel care, and I learned about using a catheter myself.”
Besides having a board-certified SCI doctor she trusted, Perkins discovered another key thing at CRI: community. She was met there by peer mentors Andrew Skinner, from the Triumph Foundation (a chapter of United Spinal Association), and Dean McCabe, who she would see again at Casa Colina’s peer support program. “It was so moving, so motivational to have these guys wheel into my room,” she says. “I always had a sort-of vision that I’d become independent. I hadn’t lost hope. But I had no idea what that looked like. These cool guys zipping around, they were the first people I’d met who looked comfortable and cool in a wheelchair.”
Skinner sees SCI newbies all the time. “There’s no denying it, these folks are devastated. But we are there for them,” says Skinner, who’s been helming Triumph for 10 years now. “We share our testimony: We’re married, have homes, jobs, we’ve got responsibilities and lots more things planned. We do what we can to exert positive energy.”
Perkins stayed in touch with Skinner and McCabe. She got valuable advice about the new lifestyle, and also about dealing with such things as spasticity and pain. “These guys were so much more helpful with some medical issues than the actual doctors were.”
Expelled Into Reality
Eventually, Perkins got rid of her halo as she learned key survival skills at Casa Colina. Then the day came for her to be “expelled from the rehab womb.” She didn’t feel quite ready — common to most people leaving the security of full-time rehab services. Her bathroom remodel at home wasn’t finished, but there was a ramp into the house and that was good enough for discharge, ready or not.
“The spinal cord injury vets warned me that rehab doesn’t get real until you’re home,” she says. “Umm, yes. What they say is true. I knew it would be. But I had no idea how true.”
The first few weeks back home: brutal. “I measured progress by length of time between meltdowns. At first, it was how long and hard it was to do the simplest tasks. Getting dressed, going to the bathroom, cooking and cleaning all took forever, and was so damned hard.”
Continuing medical care is a critical concern. “I’d been home from the hospital for a few weeks and was referred to four urologists. Two don’t deal with spinal cord injuries, one refused to take me because I’m part of an HMO, and the other wouldn’t return my calls. Same runaround for outpatient therapy. I spent three to five hours a day on the phone trying to get it sorted out … and nothing. The doctors in my network are terrible.”
Things eventually got easier. Perkins cited some little victories along the way:
Week two: “Getting through my bathroom routine alone, including the scary transfers from chair to toilet and shower bench back to the chair.”
Week four: “Figuring out the right dosage of gabapentin to alleviate my evil and incredibly debilitating nerve pain.”
Week eight: “Using a public restroom for the first time — pulling down and up pants in my wheelchair and on a toilet. This freed me to go out on day-long excursions with friends. A real life-changer. Monumental.”
Week 12: “Falling out of my chair at home alone and doing my first floor-to-chair transfer, which I’d learned a few days earlier watching a YouTube video.”
Week 16: “Training for my first race using a handcycle. Very excited!”
At the time of this writing Perkins is training to ride from Los Angeles to San Diego for a fundraiser.
Ashton Fritz’s Story
A little over a year ago, on July 28, 2017, Ashton Fritz was at a church camp in San Diego. “I was hanging with friends and we stayed up late, not wanting the fun to end on our last night. Unfortunately, while attempting a backflip with a dorm mattress laying on the floor, I snapped my neck on the landing, causing an injury that left me paralyzed. That decision forever changed my life.” And not just his life.
Fritz is still too fresh to his disability to have much of a perspective. That’s OK, he will. His story is about a family tossed into the churn, discovering tools they didn’t know they had available. The survivor community reached out. The Fritzes grabbed on. Next time, they’ll be the ones throwing out the lifeline.
Fritz’s parents, Kevin and Sarah, got the dreaded middle of the night call and immediately drove 12 hours straight from Folsom, California. “We didn’t know what we were driving to,” says Sarah. On the way down, a surgeon told the family they’d fused Fritz’s anterior spine and were maybe going to do the posterior the next day. They arrived at University of California San Diego Hospital to find Fritz with no function in his lower extremities and limited function in his upper. “We were so in the dark,” says Sarah.
The first couple of weeks there’s not much anyone can do. Floundering, that’s the word Sarah uses. Ashton was moved from intensive care to a step-down unit at the trauma hospital. By now the family’s insurance company, Kaiser, had been engaged. UCSD is out of network so the company was very keen on “repatriating” their client to a Kaiser hospital. At the two-week mark, they made arrangements for him to be flown to a hospital in Sacramento.
Not so fast, said mom and dad. The Fritzes had gotten some basic training. They went online, they tapped social media, they got advice from total strangers, they got the news media onboard. Debbie Paylor, whose son Robert had been paralyzed during a college rugby match just three months earlier, found the Fritz family by way of a Facebook page. (Turns out the Paylors live in the town next to the Fritzes.) She urged them to get in touch with Bernadette Mauro, director of resource services for the Christopher & Dana Reeve Foundation Paralysis Resource Center. Mauro had helped the Paylor family navigate Robert’s new reality and was instrumental in his move from rehab in California to Craig Hospital in Denver.
Anyone in crisis mode looking on the internet for SCI information will come across Craig in about the first three minutes. It’s a specialized high-volume SCI and brain injury hospital with a well-deserved reputation for being one of the top two or three rehabs in the U.S. As the Fritz family began to understand that there are differences between inpatient rehabs, they wondered whether there might be choices for Ashton. Says Sarah, “We knew enough that Ashton’s rehab would be abbreviated anyplace but Craig or Shepherd Center — four to six weeks versus two or three months. We also heard about the age appropriateness of the specialty centers. Did we want him sitting in Vallejo with a middle aged man who’d had a motorcycle accident, or with a grandma who’d tripped in her kitchen?”
Kaiser owns a rehab in Vallejo, California, not too far from Folsom. It’s accredited in the SCI systems of care specialty by CARF. There’s another rehab up north in Roseville. The Fritzes’ thinking was, let’s get Ashton into one of those places and then transfer to Craig.
Mauro and Sarah connected the day of the scheduled flight. “We were planning to fly to Sacramento,” says mom. “People back home, Ashton’s younger brothers and friends, were so excited. But the first thing Bernadette said was, ‘don’t get on that plane.’ She said we’d burn our one allowed flight and it would make it harder to get to a choice rehab.”
Says Mauro, “I simply told her if Ashton took that flight, Kaiser would never approve any other opportunities for transfer. I told her she had one bite at the apple and needed to choose carefully.”
Mauro’s advice: “Get yourselves to Craig Hospital.”
A Fortuitous Detour
Craig said Fritz was admissible, but they’re not in Kaiser’s network. Kaiser wanted Fritz to go to its place. A Kaiser case manager threatened the family that if they didn’t leave they’d be liable for costs staying at UCSD. “They hadn’t offered us an actual medical plan, didn’t know if there was actually a bed available in Sacramento, and so we dug in. We told them, ‘You’re not ready, we’re not ready,’” says Sarah.
The Fritzes were prepared to take the risk that they might have to self-pay, figuring they had a short window of time before Kaiser came looking for them.
Meanwhile, the Fritzes actively campaigned to pressure Kaiser. They created Team Fritz and used social media and later, TV news, to make their case. A local stranger who heard about the family’s situation on Facebook offered an unsolicited recommendation: Write a letter to the CEO of Kaiser, making the point that this is a 17-year-old boy who has his whole life ahead of him and therefore needs a top tier rehab, e.g. Craig. “Tell them he needs to thrive,” the writer said. The family followed the advice and informed the CEO they felt “coerced” into going to another hospital and would not get on a plane unless it was to Denver.
Sarah basically hid out for a few days. If she didn’t sign a release, there was no way they could send Ashton to Sacramento. Meanwhile, the Fritzes kept up the social media messaging. Another stranger came forward to inform them that his family got Kaiser to approve an out-of-network transfer to a better rehab. And they got 22,000 people to sign an online petition.
What really turned the tide was using the news media. Television stations in Sacramento and San Diego ran segments on Fritz, mentioning Kaiser by name, and noting that his future success depended on a referral to Craig.
Sarah was soon contacted by a different Kaiser case manager, who was no doubt dispatched by the CEO. By then they’d all seen the news and the wellspring of community support. There was still some “tap dancing” with Kaiser, says Sarah, as the company put up some resistance. Eventually Kaiser agreed to the transfer to Colorado. Fritz and mom boarded a plane to Denver; he was assigned the exact same room Robert Paylor had, and the same medical team. Fritz stayed four and a half months at Craig — longer than planned due to a pressure sore acquired at UCSD.
Today Fritz reports that he’s doing well and getting the hang of things. In addition to gaining more mobility and stamina, he has gotten more adept using his knuckles and thumbs to control his phone and computer and is able to feed himself.
He’s not sure he’s ready yet to live on his own. “I know it’s possible, though,” he says. “At Craig, we met a quad with a higher level injury than me; he drives a sip-and-puff with his mouth. He lives independently in his own apartment and hires his own attendants.”
Fritz has his own list of little victories, including returning to high school last winter and graduating with his class last spring. “This experience has enabled me to connect with new friends that I might have been scared to talk to previously. It’s matured me too, surprisingly. I’m more outgoing and want to get more connected in college.”
He’s well on his way, having already been elected a student senator at the local community college he attends. He plans to transfer to a four-year college and get a degree in business. “Real estate might be a good fit for me,” he says.
The Value of Specialization
I suggest that the basic issues faced by Perkins and Fritz, and anyone in the trauma/rehab/back-to-home cycle is that the value of specialization is not fully appreciated. Hospitals that are accredited have expertise, but this does not appear to be a major factor in determining the amount or quality of rehab that insurance plans will cover. SCI is enormously complex and has been recognized as a medical specialty for over 70 years, institutionalized in the U.S. with the advent of the Model Systems SCI centers nearly 50 years ago. They showed data way back then and it’s true today: Early transfer of people with traumatic SCI to integrated multidisciplinary specialized centers decreases mortality, and reduces time-consuming, expensive complications.
Specialized SCI management also reduces overall costs for insurance carriers. This is well-known in the world of workers’ comp, wherein insurers cover catastrophic care as long as their client lives. That’s why you often see workers’ comp folks getting the best care and best equipment: Higher front-end spending is cost effective in the long term. That’s far from the case with most private health plan carriers, and it’s not the case with Medicaid, though it really should be since government payors have the same long-term obligations as workers’ comp.
Getting to a top rehab should not be a challenge. But six of every seven people with new spinal cord injuries do not get to a Model Systems center, and the majority of the rest are not getting the obvious benefit of specialized, accredited rehab. And there are many low-grade HMOs that allow you 21 days of rehab at the local community hospital, and adios, you’re on your own, not our problem.
Over the last 30-plus years, managed care plans have set the agenda for rehab length of stay and discharge. Restricted services in the least expensive setting is great for the bottom line, not always so good for consumers. It’s hard to avoid the fact that many medical and rehabilitation decisions are made by insurance claims processors and not physicians. Too many folks are processed thorough a minimal and perfunctory wheelchair bootcamp. And when coverage runs out, they’re discharged, nowhere close to being ready to come back home.
A Matter of Life and Death
Does the lack of respect for SCI as a specialty make a real difference? Yes, it does, and along the continuum of care, from injury across the lifespan, it may be a matter of life and death. Short-term SCI survival has improved greatly over the past 50 years — there are more clinically incomplete injuries, attributed to better roadside and acute management. But after two years, life expectancy has not changed. In fact, according to the medical literature, mortality in spinal cord injury has actually gone up. It was higher in the 2005 to 2012 period than in the 25 previous years.
How can that be? SCI survivors are dying less from cancer, heart disease, suicide, and urinary tract diseases, same as in the general population. These gains have been offset by increased mortality rates in the SCI community for diabetes, nutritional and metabolic diseases, accidents (including drug overdoses), mental disorders (including addiction), homicides, nervous system disorders, diseases of blood, and musculoskeletal disorders (e.g. osteomyelitis).
According to the research, the mortality rate for systemic infection — septicemia — has not changed in 40 years, and no change has been reported in the death rate for respiratory diseases like pneumonia. Per the study, “significant gains in life expectancy will therefore not occur until progress is made in reducing mortality in septicemia and respiratory diseases as well as reversing trends in diabetes and accidental deaths.” To me that means better care over the lifespan will save lives; better care means providers are better trained and informed — and specialized.
Our To-Do List
What are we going to do about this? Those newly injured and their families need help navigating this system; a lot of folks needlessly thrash around trying to figure things out on their own. When they don’t, they’re back in the hospital with a major infection or complication.
Every person with a new spinal cord injury deserves to get access to the best care. Most don’t know what that is, or where to find it. I’d like to see all people with spinal cord or brain injuries assigned to a navigator who is independent of the trauma system. That’s not likely to happen, though some families do hire advocates, or sometimes attorneys, to help them sort things out.
Patient advocacy is to some degree being addressed by information and peer support agencies, like United Spinal Association and the Reeve Foundation. But these nonprofits are not in the case management business and are limited when it comes to resolving disputes.
Then there’s the internet, the go-to fire hose for those suddenly dealing with medical trauma. Be wary, of course, and sip carefully or be quickly soaked with a lot of irrelevance, including lawyer ads, stem cell therapies and faraway hospitals. Clarity, not volume, is the goal.
These days the action online seems to be on social media. Families of people with new SCIs show up hours after injury and get a lot of helpful advice. Questions get near instant responses and from what I see, not much subject matter is off limits — medical issues, therapies, medications, equipment, pep talks, and an occasional rant. And lots of prayers.
Over the years I’ve observed that success doesn’t depend only on getting good trauma care and the best rehab. As we have seen, you can get grade C rehab and still get back to being OK. The real key for someone with a new injury is having a support system — in Fritz’s case, his family. For Perkins, it was her network of runners, cyclists and friends; they helped her raise $220,000 (see Self-Funding Successes).
No network? It’s tough but possible. Find your peers, and join them. I’ve seen people with recent injuries languish alone at home before discovering the SCI family — a big, multi-sided group of surrogates that can appear in one of the many specialty post-rehab gyms popping up all over, maybe an Independent Living Center, or a wheelchair dance troupe, or somewhere else. The goal is to get smart, stay smart, take responsibility for your own health, advocate for your rights, and take advantage of the collective knowledge of the community. Then pass it forward whenever you can.
Facebook SCI Groups
Spinal Cord Injury Support Group has about 3,300 members. You have to be approved to join, as co-moderator Carolyn T. Smith says they’re on the alert to screen out devotees, wannabes and pretenders. “What we find is that when people with SCI interact with each other, they know more about their health than their doctors do.” Her advice to newly injured: “Get yourself to an excellent rehab. This can be hard for some — you have to be ready to deal with the insurance professionals, to face them down. We hope our group can help others connect the dots, to know they’re not alone.”
You Are Not Alone, Dealing with Spinal Cord Injury is the Facebook home of FacingDisability.com, a robust website featuring video archives from survivors, families and professionals. With more than 8,600 members, the FB page covers life, health, gear, adaptations, etc.
Others closed FB groups include:
• Spinal Cord Peer Support USA/Worldwide, 9,600 members.
• Spinal Cord Injury Walkers, 2,700 members
• Spinal Cord Injury Recovery Breakthroughs, 2,500 members
• Spinal Cord Injury USA Group, 1,700 members
• Wives & Girlfriends of Spinal Cord Injury (SCI) Survivors, 900 members
The First 90 Days
My own outreach, SCI: First 90 Days, in print and online, is an attempt to connect people with SCI and their families to existing information networks, very early on in acute care, with a fundamental message that understanding one’s choices drives self-advocacy. My basics:
• Get smart fast. If you don’t know your options, you don’t have any.
• Get hooked up with people who’ve been there ahead of you.
• Know what your rights are and be prepared to fight for them — including appealing insurance company edicts.
• Be extremely vigilant about your health.
• Stay hopeful and keep breathing. Yes, it totally sucks, but you have resilience you never knew about, and it does get better.
Find out more at scifirst90days.com.
Under the Affordable Care Act, you have the right to appeal decisions made by health plans, regardless of the type of insurance you have or state you live in.
• You have the right to know why a claim or coverage has been denied.
• You also have the right to appeal to the insurance company. If the case is urgent, your insurance company must speed up the process.
• If you can’t work things out through an internal appeals process, you have the right to take your appeal to an independent third party for review.
California, for example, has a Department of Managed Health Care and an Independent Medical Review and Complaint Process. It’s often worth the effort: Chances are better than 60 percent that an applicant will prevail over the health plan in an independent review.
The key to an insurance appeal is medical necessity, so it’s advisable to get your doctor onboard. Tenacity pays off; some people and families lawyer-up to battle the company. And since health plans don’t like bad press, using the news media to sell your story can sometimes seal the deal for you. That’s what the Fritz family did, and they got what they wanted.
With insurance covering less and less, injured individuals and their support systems are being forced to pick up more of the financial burdens stemming from SCI. One of the most popular ways to raise needed money is via a GoFundMe page. Perkins’ friends and family raised $220,000, while Fritz has raised over $83,000. Robert Paylor has raised over $800,000.
What are the benefits of Craig, besides having a deep culture of hope and healing, with 55 inpatients in the SCI unit at any time, and besides being a federal Model Systems SCI center? Sarah Fritz stayed free for a month in the hospital’s on-campus apartments. Ashton was able to keep up his high school work with Craig’s full-time teacher, allowing him to graduate on time the following June. Even the transition back to California was eased by Craig’s Soft Landing program. Once Ashton was ready, a nurse and an OT accompanied his mom and him on the flight and stayed with the family for a few days in Folsom. They helped get things organized with supplies, equipment and medications, lined up his high school accommodations, and even set up his local doctors’ appointments.
“We understand what challenges people face when transitioning home,” says Candy Tefertiller, director of Physical Therapy at Craig, who helped develop the program. “Soft Landing helps us improve our rehabilitation program to ensure a successful transition to the individual’s home and community.” More than 50 percent of those served by Craig come from out of state, and many are sent home with very complex technology. Says Tefertiller, the equipment needs to arrive in good working order, and the person with SCI’s family or caregivers need to be confident with operating and maintaining it.