KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Disability is like the proverbial elephant surrounded by blind folks; what it feels like has a lot to do with where you stand. I'd like to give folks a glimpse at what it looks like from the other side of the exam room desk or hospital gurney. You might be surprised.
A truism: all of us will experience at least some degree of disability and impairment during our lives. Unless you're fortunate enough to live a full and productive life and be felled by an instantaneous heart attack, at some point you will require the help of others for some of your basic needs. This can be as simple as needing a helping hand getting up the stairs after arthoscopic knee repair, all the way up to total care on a ventilator after a severe spinal injury. As a callow medical student in my 20s I was taken aback by a very experienced neurosurgical nurse who sardonically described us youngsters as "the temporarily able". She was exactly right.
Given the universality of impairment as part of the human condition, you might think that the health care system would be smoothly competent at dealing with this reality. You would be wrong. Here in the U.S. our health care system is grossly distorted by a combination of historical accidents, unintended consequences, and perverse financial incentives that have relegated the care of disability and impairment to the back of the bus. Medical care in America lionizes (and very generously reimburses) dramatic, aggressive, last-ditch 'salvage care' like coronary bypass surgery and bone marrow transplant. It barely acknowledges the importance of the grueling, diligent, unglamorous reality of therapy and maintenance care for the chronically ill and those with disabilities. And it reimburses for them in miserly fashion if at all. Some of the barriers to effective care of disability are grotesque in their cruelty.
For example: physical therapy is critical to effective recovery from knee replacement or ACL (anterior cruciate ligament) reconstruction. Yet, perversely, the largest insurer in my area imposes a $45 dollar co-pay per visit for physical therapy services. That means $135 out of pocket every week, $680 every month, for patients strugging to get back on their feet after surgery, many of them without a paycheck until they can get back to work. With costs like that, most of my patients skip the PT and hobble home with a rudimentary sheet of instructions. This is barbaric. No wonder outcomes are often 'less than optimal'.
Another example: many of my older patients have Medicare as their only insurance, or have commercial 'Medigap' plans that carefully exclude coverage for potentially expensive home care and disability services. Medicare has a number of perverse rules that seem almost designed to gratuitously punish folks who are not wealthy. Nursing home care is only covered for a limited period of time, generally for rehabilitation. Such care is generally only covered after a 'qualifying hospital inpatient admission'. Many older patients with disabilities struggling at home don't have an acute illness that would qualify them for hospitalization; so Medicare won't pay for any hospital care. But they can't get nursing home rehabilitation without first having a hospital admission. Catch 22!
After more than 25 years in primary care practice, I have learned a few things to help patients and their families negotiate the minefields and thickets of disability care. Most of these nuggets of wisdom have come from patients, social workers, nurses and therapists who learned the hard way, and were generous enough to pass them along to me. In months to come I hope to share some with readers.
I'll close with my first experience dealing with disability and impairment in what might be called a professional capacity. I spent my last summer in college working as an in-home nursing aid while desperately waiting to see if I would get into medical school or not. (At the time, medical school admission was even more brutally competitive than it is now.) One of my first regular patients was a profoundly disabled elderly gentleman who had suffered a catastrophic stroke during his last week at work before retirement. (Sometimes, life is so cruel it defies understanding.) He was aphasic (unable to speak) and completely paralyzed on his dominant side. His wife was a briskly competent and admirably sardonic retired nurse who managed his care with incredible skill and perseverence. She had been at it for two years at that point, and knew exactly what she was doing.
My very first day working in their home, the patient's wife instructed me in his daily routine and what she expected of me. She showed me the Hoyer lift she used to get him from his hospital bed to the chair or commode and offered to demonstrate how it worked, before leaving for an afternoon of errands. I was young, large, strong, proud and...dumb as a bag of hammers. I waved off her attempts to show me how to use the lift. He wasn't that big; I was sure it would be no problem moving him around. I was a wrestler in school and could bench press 350 lbs.; how hard could it be? I was too stupid to notice the wife's knowing smile as she left the home.
When she got back home after 3 hours, she was much too polite to comment on her husband's disheveled clothing and the chaotic room. I had sweated and struggled for an hour to manhandle him onto the commode and back into bed again, desperately trying to avoid dropping him. I meekly and politely asked to be shown how to use the Hoyer lift. And she demonstrated it without a single caustic comment.
Life lesson learned. I have tried to maintain something of the humility I felt that day ever since.