Anyone who has experienced the positive effects of rehabilitation in his or her own life or that of a loved one cannot help but appreciate the miracle of healing and restoration of physical function. Additionally, those of us privileged as clinicians to play a part in facilitating the body's remarkable capacity to heal and restore itself appreciate our role in a miraculous event.
But perhaps one of the most unappreciated aspects of the rehabilitation process outside the home healthcare community is that the optimal setting for rehabilitation in the vast majority of cases is a person's own home. As a former director of the Medicaid Home and Community-Based Services program, I was able to witness this truth again and again as I visited homes across the United States. Patients who had either languished or even deteriorated in an institutional setting suddenly began to improve at home. There were no fancy pieces of equipment nor 24-hour access to physicians and nursing staff. At the time, the rehabilitation protocols at home were not much different from those in the hospital or nursing home. Often, the number of encounters with skilled therapists or nurses was no more and sometimes even less than in the institution. Yet the patient began to improve. What was the new variable, the active ingredient?
In my early career, while interning as a hospital chaplain, I saw the first hint of that mysterious active ingredient. I suspect that it is as natural a part of the healing process as the formation of a scab on a wound or the voluntary immobilization of an inflamed joint. As I made my rounds of the hospital rooms each day to patients with different diseases and needs, they all expressed one universal desire: "I want to go home."
During my travels administering the Medicaid home- and community-based waiver program in Texas, I had the opportunity to visit the home of one patient in the state's Medicaid waiver program for medically fragile children. Under that program, financial eligibility and coverage rules favoring institutionalization could be waived to allow individuals to receive a wide range of home-based services as an alternative to institutional care.
The patient I visited was a toddler with a severe congenital respiratory condition who essentially had been trapped in a hospital. He was respirator dependent, and because of his condition, the costs and risks involved with his going home were troubling to both his parents and those charged with his care at the hospital. Although the Medicaid program offered waivers to allow his return home, the hospital staff said the boy's long-term dependence on the respirator and his resistance to being weaned off the respirator made it likely that he would be respirator dependent for life.
I cannot erase the memory from that home visit, during which this "typical toddler" roamed his home pulling a little red wagon with a respirator on top, trailing 30 feet of respirator tubing and an equal length of power supply cord. His mother remarked about his mobility and happiness despite periodic snagging of his lifelines on furniture, which required immediate action to get him reattached as quickly as possible. Noticing that his mom was pregnant, I offered private hope and silent prayer that her next child would be healthier.
A few years later, while working at what is now known as the Centers for Medicare and Medicaid Services (CMS), I received an out-of-the-blue call from the head of the Texas Medicaid Program. The voice on the other end of the phone asked, "Do you remember John?"
My steel-trap mind responded immediately, "John who?"
"You know, John with the little red wagon."
It clicked. "Is he okay?" I asked.
"He's more than okay. He's been rehabilitated, and has been off the respirator for a month."
My Texas colleague went on to explain that John continued to resist being weaned off the respirator until he suddenly realized that when his baby sister got to be 2 years of age and started talking, he was no longer the center of attention. He could not talk without decoupling his respirator to get his mom's attention, and by then, his sister was "center stage." When his therapist noticed this, she jumped at the opportunity to use the sibling rivalry to motivate John off the respirator.
"The folks at the hospital think it's a miracle that he's off the respirator and had to admit that this would never have happened if John was not at home," the Texan added.
My experiences in home health and community-based services taught me many things. But the most important was that home is not just a place, particularly where healing is concerned. It is the place that offers us the reality of human life, and that is where healing and rehabilitation can happen best. Just as home is the place in which our basic human needs are met, it likewise forms the environment in which the need to be healed and restored is nurtured. Many home health nurses have identified the active ingredient of home care as peace or love or caring and comfort. I suspect it actually is many things, even sibling rivalry. It is the reality of rehabilitation at home.
We are at a point in time in our country when every healthcare provider is being called upon to explain and defend the efficaciousness of their treatment and the reasonableness of its cost. The inefficiencies of the American nonsystem of healthcare and the irrationality of our American healthcare financing system are contributing to the compromise of our economic well-being. Those of us who work in home care know that we are not part of the problem. Rather, we actually are part of the solution. We see the reality of rehabilitation at home. Yet sadly, perhaps the most frequent phrase we hear from insurers is not "miracles of rehabilitation," but "no further rehabilitation potential," in other words, "no more care."
It is more important than ever that every home health clinician, every agency, and the associations that represent them tell and document the story of home care-the financial side, the quality side, and the personal side. We need to make the miracle of rehabilitation at home a reality in every decision maker's mind. The Visiting Nurse Associations of America is working to meet that challenge and welcomes your contributions to the effort.