What changes have you seen for people with disabilities?
It would be a long list. But one example: When I was injured, there were no curb cuts to allow people in wheelchairs to cross streets. The same is true of access ramps and access to public transportation. Boarding a bus or airplane was virtually impossible if you were in a wheelchair. That’s one reason I chose leg braces and crutches instead of a wheelchair.
Because it was so hard for people with disabilities to get around, many were confined to their homes or institutionalized. It’s a different story today, in part because of the 1990 passage of the Americans with Disabilities Act, which allows disabled people to enjoy access to most of the same things able-bodied people enjoy.
What’s been the impact of new types of information technology?
The changes have been staggering. Cell phones, computers, and other electronic devices benefit disabled people by allowing them to maintain channels of communication in ways they never could before.
Disabled people can access a computer using voice recognition or other means. There’s a device called brain-computer interface that allows someone to communicate by thinking various commands. This device then translates those thoughts to the computer. It’s incredible how these technologies are expanding the lives of people with significant disabilities.
How about prosthetic devices?
We’ve seen the development of prosthetic arms than can be guided by the brain. Transistors are inserted into the prosthetic-robotic limb. Signals from the brain are sent to the limb. The Department of Defense is seeking to develop a prosthetic arm so advanced it can be placed on a soldier so he can return to the front line if he’s lost an arm. This was the stuff of science fiction when I was injured.
Have NRH researchers taken part in these new developments?
We were involved in some of the precursor research that led to the development of the brain-computer interface, and NRH scientists also helped develop something called “eye gaze,” in which someone can look at a computer screen and pick out letters to build words and sentences.
This high tech sounds expensive.
Yes, and unfortunately inaccessible to many. I still wear basically the same steel-and-leather braces that FDR wore 65 years ago. New braces have been made from carbon-fiber epoxy resins, the same material used in lighter wheelchairs, reducing the weight of leg braces by more than half. But if an insurer can pay $7,000 for a pair of steel braces, it won’t want to spend $10,000 for a pair of carbon-fiber epoxy-resin braces. This is the problem with any new technology. If you are a paraplegic, you either get a pair of braces like me or you get a wheelchair, but you probably can’t get both.
How are rising health-care costs affecting rehabilitation?
In many ways—most of them not good. We have a much higher level of medical and clinical sophistication than we had 20 years ago, and that adds to our cost.
Like everyone else in medicine, we’re getting hit by health insurers looking for ways to cut costs. We often negotiate with financial providers who don’t comprehend the value of rehabilitation. This is not always their fault. Many financial providers are simply so young they don’t grasp the benefits of rehabilitation following a stroke or spinal-cord injury.
Acute-rehabilitation hospitals are also getting competition from nursing homes that put “rehabilitation” in their title. That will confuse someone from Aetna or BlueCross BlueShield who is negotiating costs and discovers that rehab in a nursing home costs $600 a day while comprehensive rehabilitation at a specialty hospital runs $2,000 a day. If a nursing home gives an hour of therapy a day and we provide a minimum of three hours of rehabilitation a day, who do you think insurance companies will contract with?
Are rehabilitation hospitals an endangered species?
Any medical institution that does not pay attention to a multitude of metrics will not be able to defend its existence. If someone goes to an acute-care hospital for a procedure, he or she can either live or die. When admitted to a rehabilitation hospital, how does one measure how much better the person will live after rehabilitation? This is difficult to quantify.
That said, we’re never going to transfer people with spinal-cord or traumatic brain injuries straight from an acute-care hospital to home, so we will continue to perform a vital function. Some people, such as those with a hip or knee replacement, who don’t require high-intensity rehabilitation and don’t need to be in a rehabilitation hospital such as NRH probably can go to a less intensive rehabilitation setting. But people with serious injuries need the intensive rehab we offer, and that’s costly.
The rub will be whether someone with a major disability receives the high level of rehabilitation care that we know they require or whether these people will be referred to a less intensive rehabilitation setting because it’s cheaper. Few health insurers think long-term and consider a person’s independence and potential productivity over a lifetime.
What don’t the able-bodied get about rehabilitation?
Few people take the time to understand rehabilitation until they need it or a loved one needs it. Why learn about something when you hope you’ll never need it? A million and a half people a year in this country suffer traumatic head injuries, and maybe 100,000 of those suffer an injury serious enough to cause the permanent loss of one life function. Another 800,000 Americans suffer strokes every year, and some 10,000 young people suffer spinal-cord injuries. When you add them all up, it is still less than a million people annually, and we have 300 million living in the country. But this is changing as we live longer. More Americans are living with permanent disabilities than ever before.