The GoFundMe request jumped out at me as I was scrolling through posts on LinkedIn.<\/p>\n

Nora Super, executive director of the 2015 White House Conference on Aging and former director of the Milken Institute\u2019s Center for the Future of Aging, was seeking contributions after suffering a severe spinal cord injury.<\/p>\n

\u201cRight now, I have no feeling below the waist. I need lots of equipment to go home from the hospital and live safely and independently,\u201d she wrote in her appeal.<\/p>\n

Since coping with disability \u2014 and the cost of coping with disability \u2014 is an enormously important issue for older adults, I wondered if Super would discuss her experiences and try to put them in perspective.<\/p>\n

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. \u2014 a third of that age group \u2014 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.<\/p>\n

Super agreed to talk to me, but her story was more complicated than I anticipated.<\/p>\n

First, some context. Super, 59, has been open about her struggle with major depression, an issue she\u2019s written about<\/a>. In mid-June, after being fired from the Milken Institute, she began slipping into another depression \u2014 her fifth episode since 2005.<\/p>\n

Super\u2019s psychiatric medications weren\u2019t 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\u2019t get an ECT appointment until Aug. 7.<\/p>\n

On July 30, convinced that her life had no value, she attempted to end it. This was the event that led to her injury.<\/p>\n

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\u2019t ensure her safety, said Len Nichols, her husband.<\/p>\n

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.\u00a0<\/p>\n

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.<\/p>\n

It took six days to get Super admitted to rehab. And that was just one of the challenges Nichols faced.<\/p>\n

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Over the next month, he prepared for Super\u2019s return home, at considerable expense. An elevator was installed in the couple\u2019s three-story home (their bedroom is on the second floor) for $38,000. A metal ramp at the home\u2019s 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.<\/p>\n
Super\u2019s 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.<\/p>\n
\u201cIt\u2019s been surprising how much stuff I\u2019ve needed and how much all of it costs,\u201d Super admitted when we spoke on the phone.<\/p>\n
\u201cEven with all our education, resources, and connections, we have had a hard time making all the arrangements we\u2019ve needed to make,\u201d Nichols said. \u201cI cannot imagine how people do this with none of those three things.\u201d<\/p>\n
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.<\/p>\n
\u201cI don\u2019t think I ever appreciated how essential their work is before this,\u201d he told me. \u201cThey explain what you\u2019ll be able to do for yourself and then they help you do it. They show you a pathway back to dignity and independence.\u201d<\/p>\n
Still, the transition home has been difficult. \u201cIn the hospital, nothing was expected of me, everything was done for me. In rehab, you\u2019re very goal-oriented and there are still people to take care of you,\u201d Super told me. \u201cThen, you come home, and that structure is gone and things are harder than you thought.\u201d<\/p>\n
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\u2019s long-term care insurance pays $100.<\/p>\n
They\u2019re lucky they can afford it. Medicare typically doesn\u2019t pay for chronic help of this kind, and only about 7% of people 50 or older have long-term care insurance.<\/p>\n
What does Super\u2019s future look like? She isn\u2019t sure. Physicians have said it could take a year to know whether she can recover function below her waist.<\/p>\n
\u201cI\u2019m happy to be alive and to see how I can take where I\u2019ve ended up and do something positive with it,\u201d she said. \u201cI still have a voice, and I can help people understand what it is to live with physical limitations in a way that I\u2019ve never really understood before.\u201d<\/p>\n
Hopefully, this sense of purpose will sustain her. But it won\u2019t be easy. After we spoke, Super became discouraged with her prospects for recovery and her mood turned dark again, her husband said.<\/p>\n
\u201cKnowing 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,\u201d said Stuart Butler, a senior fellow at the Brookings Institution who has worked with Super in the past.<\/p>\n
Persistent accessibility problems for people with disabilities are part of what Super wants to speak out about. \u201cI live in an old city with sidewalks that are very uneven, and just getting down the street in my chair is a big hassle,\u201d she said. \u201cFinding parking where we can open the door fully and get me out is a challenge.\u201d\u00a0<\/p>\n
Nichols has been surprised by how many medical offices have no way of lifting Super from her wheelchair to the exam table. \u201cThe default is, they ask me, \u2018Can you pick her up?\u2019 It\u2019s stunning how poorly prepared they are to help someone like Nora.\u201d<\/p>\n
Then, there are reactions Super encounters when she leaves the house. \u201cGoing 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,\u201d Super said.<\/p>\n
Nichols finds himself thinking back to something a neurosurgeon said on the day Super was injured and had her first operation. \u201cHe told me, \u2018Look, there\u2019s more damage than we thought, and she won\u2019t be what she was. You\u2019re not going to know for six to 12 months what\u2019s 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.\u2019\u201d<\/p>\n
We\u2019re eager to hear from readers about questions you\u2019d like answered, problems you\u2019ve been having with your care, and advice you need in dealing with the health care system. Visit\u00a0kffhealthnews.org\/columnists<\/a>\u00a0to submit your requests or tips.<\/em><\/p>\n
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