Last week, we published a series of profiles in resiliency.

Elizabeth Floyd Mair followed up on people we had written about over the years who had suffered the unthinkable: spinal cord injuries that left them paralyzed.

What struck us first was their courage — each built or is in the process of building a new life, and all four were willing to share their stories so that the rest of us may learn.

Two of them even used the word “lucky” describing their situations.

“I’m just lucky,” said Paul Gait, a college lacrosse legend who lives in Altamont and designs, manufactures, and sells lacrosse equipment. A fall less than a year-and-a-half ago left him in a wheelchair.

He is lucky, he said, to have the resources to be able to continue the job he loves and to make accommodations to keep himself as independent as possible, which prevents him from getting too down about his injury. 

Jim Ambrose, who has been living with quadriplegia for four decades after he dove into a pool thinking it was deeper than it was, said he was lucky his accident came after he had already established a career and a family.

That was a common thread of the four people Floyd Mair profiled: Each is able to live at home because of the support they are receiving from family and friends.

Chris Lysogorski, who, at age 22, hit a log while snowmobiling four years ago, said, “My parents have been my caregivers 24 hours a day. If it wasn’t for them, I’d be in a nursing home.”

“And we’d do it all over again,” his mother rejoined.

Lysogorski lives in a special addition, built by friends and family, to the Guilderland home where he grew up.

Susan Albright, a retired teacher, suffered paralysis during life-saving heart surgery less than a year ago and is now back in her New Scotland home. She is being cared for by her husband, Tim, who has retired from managing Indian Ladder Farms and suffers himself from an inherited lung disability.

These resilient people spoke not just of helping themselves through their ordeals but also of helping others along the way.

Ambrose recalled how one of his daughters was being bullied at Lynnwood Elementary School because he was in a wheelchair. He did something about it — to enlighten others.

Ambrose asked to speak to students about living with a disability and let them ask anything. He had kids tour his van outfitted for him to drive while sitting in his wheelchair. Once, one of the students at a talk was a girl who was herself severely disabled and who used a wheelchair. Instead of just showing her the van, they slid her, in her chair, behind the steering wheel, Ambrose recalled, and her face lit up. “I think it suddenly dawned on her that maybe there were possibilities,” he said.

His daughter stopped being teased, he said.

Paul Gait, who spent six weeks in Sunnyview Rehabilitation Hospital, felt badly for some of his neighbors there who had greater challenges than he: people who had to go onto disability, who lived in a second-floor walk-up, or who could not afford to upgrade from the manual wheelchair that was all their insurance would cover.

Gait told Floyd Mair he hopes to form a not-for-profit that would help provide people who cannot afford them with power wheelchairs, perhaps by organizing charity lacrosse or golf events.

So, from reading these profiles in resilience, we have learned life lessons any of us can use: care for those you love; when someone is bullied, educate rather than lashing out; when you see someone in need, look for ways to support them; when life as you knew it abruptly ends, find new ways to live and give.

In addition to these overarching lessons, we learned from reading these profiles some very specific problems with the health-care industry in our nation.

Ambrose put it succinctly and forcefully: “The healthcare industry needs to come up with a different paradigm,” he said.

The industry, he correctly explained, is geared almost entirely toward “short-term traumatic disability: you break your arm, break your leg, and then it goes away.” It’s not geared toward caring for people with any long-term conditions, including paralysis, multiple sclerosis, or cerebral palsy.

That needs to change.

In the United States, for traumatic spinal-cord injuries alone, there are about 54 cases for every one million people, or about 18,000 new cases each year, according to the National Spinal Cord Injury Statistical Center; new cases do not include those who die at the location of the incident.

Vehicle crashes are the leading cause of spinal-cord injuries followed by falls, violence — primarily gunshot wounds, and sports accidents. The length of hospitalization following an injury has decreased from 30 days in the 1970s to 19 days since 2015. Similarly, in the last half-century, the average stay in a rehabilitation center has decreased from 110 days to 37 days.

After rehabilitation, many people with paralysis end up in institutions rather than back home. This is costly not just in dollars but in terms of good for our society.

A person living with a spinal-cord injury needs expensive equipment, personal care, and accessible transportation. We can see from our four profiles that people with money and good private health insurance fare better than those without.

The Albrights, living on $42,000 annually in retirement benefits, had to liquidate their assets to qualify for Medicaid. They sold Susan’s car and the antique tractors Tim was rebuilding as well as his valued historic books.

Ambrose said that one of the aids who comes occasionally to help him cannot afford insurance as she makes too much to qualify for Medicaid, but not enough to afford private insurance. 

“My wife has been my primary caregiver for 40 years,” he said, adding that she gave up most of her life to take care of him and their children. “I’m very fortunate. My wife is still with me. That’s not a very common occurrence.”

The World Health Organization put out a report summarizing the best available evidence on the causes, prevention, care, and lived experience of people around the globe with spinal-cord injuries.

“Many of the consequences associated with spinal cord injury do not result from the condition itself, but from inadequate medical care and rehabilitation services, and from barriers in the physical, social and policy environments that exclude people with spinal cord injury from participation in their communities,” the WHO report says, calling for full implementation of the Convention on the Rights of Persons with Disabilities to address these gaps and barriers.

Among its list of essential health measures, WHO calls for access to appropriate assistive devices that can enable people to perform everyday activities; reducing functional limitations and dependency; and specialized knowledge and skills among providers of medical care and rehabilitation services.

The report also lists essential social and economic measures to secure the right to education and economic participation for those with spinal-cord injuries.

Legislation and policies, it says, should promote physically accessible homes, schools, workplaces, hospitals, and transportation; inclusive education; elimination of discrimination in employment and educational settings; vocational rehabilitation to optimize the chance of employment; micro-finance and other forms of self-employment benefits to support alternative forms of economic self-sufficiency; and correct understanding of spinal-cord injury and positive attitudes towards people living with it.

These are initiatives that should be pursued in the United States of America and in our state, New York.

James R. Fallon Jr., who chaired an ad hoc committee of the Health Policy Agenda for the American People, wrote of Medicaid in a National Institute of Health article in 1990, more than 30 years ago, “We are regularly confronted with urgent crises that forestall consideration of long-range problems and solutions. However, the failure to take on broad, systemic issues has also stymied legitimate efforts to reform or create anew the program ….

“Either the program’s distinct identity should be retained — with significant expansions and modifications — or it should be subsumed within a broader national health financing strategy.”

Medicaid was signed into law alongside Medicare in 1965, Authorized by Title XIX of the Social Security Act. Each state administers its Medicaid program differently within parameters set by the federal government.

Starting in 2014, the Affordable Care Act, widely known as Obamacare, provided states the authority to expand Medicaid eligibility to people under age 65 in families with incomes below 133 percent of the federal poverty level and standardized the rules for determining eligibility and providing benefits through Medicaid, the Children’s Health Insurance Program, and the health insurance Marketplace.

According to a 2023 NIH report, the underinsurance rate in the United States has increased during the last decade and it is associated with detrimental effects on healthcare utilization and outcomes.

Quite simply, we need the massive overhaul or rethinking that Fallon’s committee called for more than 30 years ago.

As Fallon pointed out, “The principal means of fiscal restraint under Medicaid is cost avoidance through restrictive eligibility, benefits, and payment policies.” He also noted “the Medicaid patchwork” is “defined primarily by annual State budget and legislative battles.”

One final prescient comment from Fallon those three decades ago: “Medicaid is often assumed to be the salve for multiple social ills, many of which have origins and require interventions outside the health care system. Burgeoning long-term care demands, for example, signify a much broader failure of social supports — Medicaid acts as a financial buffer after the fact.”

Someone like Tim Albright, to give one small but potent example, should be able to have a shower chair for his wife that Medicaid was supposed to provide months ago. He called Medicaid for months to ask about it, and it was not until February that they told him Sunnyview had sent its prescription to a vendor who was not on the Albrights’ list of approved vendors.

Medicaid said it could not just send the prescription to an approved vendor. Instead, the couple had to go back to Sunnyview and get Susan re-evaluated and get a new prescription. Now Tim uses a Hoyer lift to get Susan into a manual wheelchair in the shower.

The Albrights have not been able to get aids to come to their rural home to provide hands-on help. Sunnyview gave them a list of nurses who could come to the house, but Tim Albright said they charged about $40 an hour and had no one available.

A home health aid came once for an afternoon, but she called her agency as soon as she left and told them she did not want to come back. Her agency had not told the aid that Susan was paralyzed, Tim said. Albany Visiting Nurses has come several times, but only to check that he is caring for Susan correctly.

If we are to meet long-term care demands, we need broader social supports, just as Fallon and his committee of the Health Policy Agenda for the American People determined.

Because the Albrights spent their lives contributing to their community, they had volunteers who built ramps to make their house accessible, they had friends who contributed to a GoFundMe campaign so that Susan could have a used van to accommodate her wheelchair — but what about people without those resources?

We need a massive reform of how our nation’s health-care and social-support systems work.

Just as the World Health Organization has determined, inadequate services and “barriers in the physical, social and policy environments” exclude people with spinal-cord injuries from participating in their communities.

We would all benefit by that participation. We need only look at the resilient people profiled last week to see the truth of that. Paul Gait is not only continuing his work producing lacrosse equipment but thinking of ways to improve the lives of others with paralysis.

Chris Lysogorski, who can no longer be a diesel mechanic, is thinking of going back to school to become a counselor. Jim Ambrose not only contributed in his professional life but also to the education of Guilderland students.

And, as Tim Albright said of his wife, Susan: She’s very compassionate and caring, always helping other people … She’s a very sweet, kind person who always pays attention.”

Our world is richer because of these four people. We need to learn from their experiences how to better support and include people like them.