By Judith Graham

The GoFundMe request jumped out at me as I was scrolling through posts on LinkedIn.

“Right now, I have no feeling below the waist. I need lots of equipment to go home from the hospital and live safely and independently,” she wrote in her appeal.

Since coping with disability — and the cost of coping with disability — is an enormously important issue for older adults, I wondered if Super would discuss her experiences and try to put them in perspective.

The Institute on Disability at the University of New Hampshire ran the numbers for me: About 19 million people 65 and older in the U.S. — a third of that age group — had some type of disability in 2021, the latest year for which data is available. This includes difficulty with hearing, vision, cognition, mobility, or activities such as bathing, dressing, or shopping.

Super agreed to talk to me, but her story was more complicated than I anticipated.

First, some context. Super, 59, has been open about her struggle with major depression, an issue she’s written about. In mid-June, after being fired from the Milken Institute, she began slipping into another depression — her fifth episode since 2005.

Super’s psychiatric medications weren’t working, she said, and she sought electroconvulsive therapy (ECT), which had been effective for her in the past. But mental health services are difficult to get in a timely way, and Super couldn’t get an ECT appointment until Aug. 7.

After two weeks in intensive care and a recovery unit, Super was ready to leave the hospital. But no rehabilitation facility would take her because of her mental health crisis. Without psychiatrists on staff, they claimed they couldn’t ensure her safety, said Len Nichols, her husband.

Nichols, 70, has held several high-level health policy positions during his career, among them senior adviser for health policy at the Office of Management and Budget during the Clinton administration and director of the Center for Health Policy Research and Ethics at George Mason University. 

Using every contact he could, Nichols searched for a facility in New Orleans where Super could get intensive rehab services. During the pandemic, the couple had moved there from their longtime home in Arlington, Virginia. New Orleans is where Super grew up and three of her sisters live.

It took six days to get Super admitted to rehab. And that was just one of the challenges Nichols faced.

Over the next month, he prepared for Super’s return home, at considerable expense. An elevator was installed in the couple’s three-story home (their bedroom is on the second floor) for $38,000. A metal ramp at the home’s entry cost $4,000. A lift for their Jeep cost $6,500. A bathroom renovation came to $4,000. An electronic wheelchair-style device that can be used in the shower was another $4,000.

Super’s privately purchased insurance policy covered a wheelchair, bedside commode, hospital bed, and a Hoyer lift (a device that helps people transfer in and out of bed) with a small monthly copayment.

“It’s been surprising how much stuff I’ve needed and how much all of it costs,” Super admitted when we spoke on the phone.

“Even with all our education, resources, and connections, we have had a hard time making all the arrangements we’ve needed to make,” Nichols said. “I cannot imagine how people do this with none of those three things.”

He showered praise on the physical and occupational therapists who worked with Super at the rehab facility and taught him essential skills, such as how to move her from bed to her wheelchair without straining his back or damaging her skin.

“I don’t think I ever appreciated how essential their work is before this,” he told me. “They explain what you’ll be able to do for yourself and then they help you do it. They show you a pathway back to dignity and independence."

Still, the transition home has been difficult. “In the hospital, nothing was expected of me, everything was done for me. In rehab, you’re very goal-oriented and there are still people to take care of you,” Super told me. “Then, you come home, and that structure is gone and things are harder than you thought.”

Fortunately, Nichols is healthy and able to handle hands-on caregiving. But he soon needed a break and the couple hired home-care workers for four hours a day, five days a week. That costs $120 daily, and Super’s long-term care insurance pays $100.

They’re lucky they can afford it. Medicare typically doesn’t pay for chronic help of this kind, and only about 7% of people 50 or older have long-term care insurance.

What does Super’s future look like? She isn’t sure. Physicians have said it could take a year to know whether she can recover function below her waist.

“I’m happy to be alive and to see how I can take where I’ve ended up and do something positive with it,” she said. “I still have a voice, and I can help people understand what it is to live with physical limitations in a way that I’ve never really understood before.”

Hopefully, this sense of purpose will sustain her. But it won’t be easy. After we spoke, Super became discouraged with her prospects for recovery and her mood turned dark again, her husband said.

“Knowing her, I believe that she will make it her mission to help others better understand the enormous and multiple challenges associated with the onset of a disability, and she will press for changes in our health system to improve the lives of families who have to deal with disabilities,” said Stuart Butler, a senior fellow at the Brookings Institution who has worked with Super in the past.

Persistent accessibility problems for people with disabilities are part of what Super wants to speak out about. “I live in an old city with sidewalks that are very uneven, and just getting down the street in my chair is a big hassle,” she said. “Finding parking where we can open the door fully and get me out is a challenge.” 

Nichols has been surprised by how many medical offices have no way of lifting Super from her wheelchair to the exam table. “The default is, they ask me, ‘Can you pick her up?’ It’s stunning how poorly prepared they are to help someone like Nora.”

Then, there are reactions Super encounters when she leaves the house. “Going down the street, people look at me and then they look away. It definitely feels different than when I was able-bodied. It makes me feel diminished,” Super said.

Nichols finds himself thinking back to something a neurosurgeon said on the day Super was injured and had her first operation. “He told me, ‘Look, there’s more damage than we thought, and she won’t be what she was. You’re not going to know for six to 12 months what’s possible. But I can tell you to do as much as you can as soon as you can to move on to a new normal. Millions of people have done it, and you can too.’”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system.

Visit kffhealthnews.org/columnists to submit your requests or tips.KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF. (SC/KFF)