TARPON SPRINGS — Larry Tilson, 52, figures he's doing pretty well for a guy with Lou Gehrig's disease.
Three-quarters of people with the incurable neuromuscular condition die within 3 to 5 years of diagnosis. Tilson recently passed that five-year mark and can still walk, talk and dress himself. He credits an innovative therapy that has helped his brain and muscles stay in synch.
But he gets the therapy only sporadically. Medicare provides a home health therapist off and on, but Tilson has to suffer a medical crisis, such as a fall, first.
"I just got therapy again three months ago. I had 18 stitches in my head after I slipped and fell,'' Tilson said recently. "I called and said, 'I'm falling down again,' so there was criteria enough for them to come back in.''
Over the last 18 months, the former steel fabricator says, he has started and stopped therapy four times.
That's about to change. A system that has usually waited for a crisis before helping older and disabled Americans is now creeping toward preventive care and increased efficiency.
In the home health care arena, Medicare has focused mainly on short-term rehabilitation, sending in skilled professionals after accidents, acute illness or other serious flareups.
Break a hip or suffer a stroke? A therapist will work to get you walking again. Diabetic trauma? A nurse can stabilize your blood sugar with tests, diet and insulin shots, then teach you to do it yourself. Once their task is complete, though, they leave.
This is an "acute care'' model — fine for curable illnesses and fixable injuries. But it doesn't work well for chronically ill people like Tilson, whose problems never improve, and may not even stabilize for long.
Tilson's weekly therapy, when he can get it, has him hitting a trigger with his fingers or foot when a sound goes off. It somehow helps his brain and muscles stay connected, he says. He feels better, gets around more securely and — for a while — staves off the inevitable decline.
But once he reaches goals set by his doctor — like being able to straighten out his fingers again — the home health therapy ends. He goes it alone for a few months, regresses, falls and the cycle begins anew.
Last month, the U.S. Department of Health and Human Services tentatively settled a nationwide class action lawsuit designed to give people with chronic illnesses more access to home health care.
The settlement would eliminate a widely practiced rule of thumb that home health care is restricted to people whose conditions can improve. If a federal judge approves the deal, the government will soon instruct doctors, home health agencies and the private contractors who review Medicare's bills that this informal "improvement standard'' no longer prevails.
Instead, people like Tilson will qualify if home care can maintain their current condition or slow their decline.
Over the last decade, home health care has risen from about 3 percent of Medicare's overall budget to about 4 percent, as baby boomers enter the system and financial incentives push people out of hospitals and nursing homes.
It may take months to sort out how this new "maintenance standard'' will affect Medicare rolls, says Bobby Lolley, executive director of Home Care Association of Florida. It depends on how much care the government will approve.
"We hope this will allow a long-term relationship, perhaps checking in less frequently,'' Lolley says. "We hope to give seniors the appropriate level of care instead of arbitrarily discharging them and then having them come back with an acute problem.''
HHS spokeswoman Erin Shields said Medicare does not expect costs to rise "beyond what is projected,'' but she declined to elaborate on why.
But Benjamin Gilbert, owner of Hygeia Home Health, in Largo, thinks ongoing nursing supervision will compensate for its cost by heading off expensive hospitalizations.
People with Parkinson's or Alzheimer's disease who cannot easily get to the doctor will benefit from intermittent monitoring within their home, he says. Do they need a dietary change? Is their medication still working? Should they start using a walker?
Often, frequent adjustments can keep people from falling or contracting pneumonia after food lodges in their lungs, he says.
"Let's say it costs $20,000 a year,'' Gilbert says, "but they don't break their hip,'' which could cost Medicare $70,000 for hospitalization and expensive rehab.
Arnie Cisneros is president of HHSM, a Michigan company that trains home health agencies to navigate Medicare rules. Maintenance services also could cut costs in a more subtle way, he says: They could force bureaucrats, doctors, agencies and patients to target care more efficiently.
Right now, Medicare tends to pay for home health care in 60 day blocks, often with another 60 day extension. Because rehab is the only stated goal, doctors and agencies tend to fill up those 60 days with frequent visits from a licensed therapist or skilled nurse, Cisneros says — even when long-term, infrequent care might be more appropriate.
Consider a stroke victim's progress:
Rehab: A therapist comes in with daily exercises and gets the patient walking again. This could happen within weeks, Cisneros says.
Maintenance: The same patient has a paralyzed arm that tends to tighten against the chest, which complicates bathing and leads to skin breakdown and ulcers. A nurse could come once a month to evaluate the arm and make adjustments when necessary.
By explicitly allowing maintenance care — with its own billing code — Cisneros says, Medicare can start pushing doctors and agencies to shift patients from the costly rehab phase to the cheaper maintenance phase as soon as clinically possible, even if the current 60 day rehab window has not expired.
"If a patient with a knee replacement can get better in eight days,'' Cisneros says, "we need to get them better in eight days.''
Stephen Nohlgren can be reached at firstname.lastname@example.org.