Photo: Carol Mader, an RN with Youthful Aging Home Health, helps Lucille Barrach adjust her ankle brace at her home in Kobernick House in Sarasota. (Sarasota Herald-Tribune/Dan Wagner)
Part 2. Read Part 1 hereand Part 3 here.
SARASOTA, Fla.— Many families plunge into the mysterious universe of elder home care after a hospital stay — often an unexpected one.
Shortly before it's time to go home, the patient or a relative typically receives a brochure for the hospital's recommended home health agency with a brief discussion of the limited rehabilitation services Medicare will cover.
But the family often does not realize that visiting nurses who replace catheters or therapists who monitor exercises are not much help when it comes to what recently hospitalized elders need most: assistance in bathing, dressing or just moving from bed to chair to bathroom.
Families Unaware of Risks
Families often are unaware that their search for these services could involve crippling costs, expose them to the potential for elder fraud, and immerse them in a fast-growing industry where many workers lack the training and skills needed for safe and reliable caregiving.
Although most Americans — 89 percent in one survey — say they would prefer to age in their own homes, few understand the implications of opening those homes to strangers who can provide the help they need. And surveys show that very few Americans consider the price tag in advance.
As families turn increasingly to home care providers, they need to be cautious consumers, say experts, doing research, asking lots of questions and interviewing at least three applicants.
Along with variable levels of skill, says attorney Ira Weisner, comes a heightened opportunity for elder fraud. Weisner, who has spent 30 years practicing elder law in Sarasota, Fla., sketches a typical scenario in which a trusted, and much-needed, caregiver easily becomes closer to the client than his or her relatives are.
"It can begin very innocently," he says. "The caregiver may say something like: 'Your daughter hasn't called in a long time, has she? It doesn't seem like she cares about you very much. You deserve better.'"
From there, he says, it's a short transition to an interdependent relationship where a caregiver can cross the line into financial or emotional exploitation.
"The thing you're always going to hear" as an attorney, he says, "is, 'All of a sudden I can't get ahold of Mom anymore.' It's always a mucky situation: Was permission given to use the money, the credit card, the car? There are a lot of psychological issues going on."
Family caregivers can be just as open to temptation, Weisner says. But the share of elders who depend on paid assistance is at 35 percent and rising — and the job opportunities in home health for workers with limited educations and little screening compound the possibilities for elder fraud.
Chernof, of the SCAN Foundation, believes a well-designed national home care network will require a new approach that doesn't come naturally in a traditional, top-down medical culture.
"It all comes down to preserving the 'personness' in that health trajectory," he says. "That's how you weed out fraud and abuse; that's how you weed out bad caregivers."
-- Barbara Peters Smith
"I think the base of political support is there for expanding and improving in-home care," says Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies issue in aging. He believes we will see "essentially a doubling" of the share of elders who remain at home instead of moving to nursing homes or other facilities.
No one knows what the new system will look like, and many specialists on aging believe the effort to redesign home health care is happening too quickly.
But Bruce Chernof, president of the SCAN Foundation— a California nonprofit that promotes aging with dignity and independence — has a more hopeful view.
He concedes it will not be easy to build a better system, but says anything will be an improvement.
"We already have a radically decentralized system that has no oversight whatsoever," he says. "There are tons of community providers, offering bits and pieces of services. Nobody's looking at the whole person."
Strangers in the House
Even though a new approach to home care is evolving, industry experts advise people to do their homework — and be prepared for sticker shock. Some elders have long-term care insurance that covers home care, but most pay out of pocket or rely — increasingly — on Medicaid, the government health program for low-income Americans.
For the most part, Medicare only covers skilled nursing in the home — not services a family member could perform, like sorting medications or monitoring blood pressure.
"I would say 50 percent or more of the clients who contact our office think Medicare will pay for everything," says Annalise Smith, a regional director for the home health agency SeniorBridge.
While about half of people 85 and over need help with dressing, bathing or meal preparation, she adds, "so many people wait until the crisis occurs before they even think about these things."
The 2012 national average hourly rate for home health aides averaged $21, up 5.3 percent from the year before, according to the MetLife Mature Market Institute.
In Florida the average was $18, ranging from a low of $13 to a high of $25 an hour. But a lot of this money goes to administrative costs — insurance, training, hiring and background checks — and the national average wage for an aide is $9.85.
The Great Recession led to a multiplication of home health businesses that is confusing to consumers, most of whom have never sought such services before.
Just as more Americans lost their jobs, the demand for elder care increased, drawing displaced workers and entrepreneurs into the market.
"There are a ton of them out there, and they're all different," Christensen says. "With the way the economy went, you had real estate agents, guys in construction that lost their jobs and said, 'I'll just become one of these home care companions.' With the style of care that is out there right now, you've got to be really careful about what you're getting and who you're bringing in the home."
Paulina Testerman, an independent home health provider for 20 years in Sarasota, has seen many clients "close their eyes and jump" into a caregiver relationship. The most they usually require, she says, is that she is bonded — insured against loss.
"That really means nothing," she says. "All that does is protect them from $10,000 worth of things I could steal. If you're a good caregiver, you want people to check your references.
"It's about asking family and friends, 'Who did you use?' "
Testerman says the rising demand for home health care has induced more people to obtain certified nurse assistant licenses when they are not suited for the work.
"They take young girls who aren't fit for changing diapers and they're pushing them into it," she says. "These girls can get their CNA overnight. But it's not just about changing a diaper; it's about taking care of somebody who needs more love, not less."
Christensen advises families desperate to arrange safe home care to interview at least three reputable caregivers before picking one.
"I don't go and buy a car at the first place I stop," he says. "You don't open the phone book and pick a dentist. But when you're in the hospital and you don't know an agency, they provide you with theirs. Or your mom's sick, you don't know who to call, and you pick the first one you see. And the first question is always, 'How much is it?'"
Florida is one of the few states to require certification for home caregivers. A pilot project in six other states, funded by the Affordable Care Act, is testing a training program for personal care aides that would go beyond that minimal start.
"The purpose was to see whether, as a country, we can establish a gold standard for long-term care at home," says Dorie Seavey, director of policy research for the Paraprofessional Healthcare Institute.
Seavy says the results so far are encouraging, because the new training programs are based on what works best for adult learners.
"In the old days, they would put women in a conference room and put a video on and leave the room," she says. "We know now that is not the most effective way for teaching individuals who are doing this work. Most of them have no more than a high school diploma, and for many, English is a second language."
Seavy acknowledges that a better-trained home care workforce may be more expensive. But she believes it's an investment worth making.
"One thing I feel strongly is that better pay and working conditions for these aides could pay for themselves," she says, "reducing turnover and the cost of public subsidies these workers rely on to meet basic needs."
Paying workers more would not only stabilize the workforce, Seavy argues, but also save taxpayers money.
"PHI estimates that about half of all aides live in households that rely on public assistance," she says. "In Wisconsin we crunched the numbers, and found a hidden public subsidy of one to two dollars for every hour of home health work."
Some $6 billion a year is spent on direct care, Seavy says, but that "includes the cost of recruiting and hiring and training replacement workers." Reducing turnover would also improve care, she argues — because having the same caregiver over time leads to better health outcomes for patients.
Nicci Kobritz, owner of Youth Aging home health, says her Sarasota clients value that consistency.
"The issue for us is that they don't want a revolving door," she says. "Particularly with dementia patients, that becomes really important."
Many of her recent hires, Kobritz says, are baby boomers who have experience after caring for their own parents.
"We're seeing a lot of older people who cannot leave the workforce because of economic reasons, and they're coming into home health care," she says. "They're our best workers. They show up, and they don't feign injuries."
Seavy, the economist for the health care institute, says workers who are semi-retired could prove to be a real boon for the home care revolution.
"There are a lot of skills that someone a bit older can bring to the table," she says. "It takes a lot of maturity and experience to go into someone's home — even getting there and showing up on time, and having the patience to navigate the family situation."
Barbara Peters Smith wrote this article for the Sarasota Herald Tribune as a John A. Hartford Foundation Journalist in Aging Fellow, a collaboration of New America Media, MetLife Foundation and the Gerontological Society of America. Copyright © 2013 HeraldTribune.com — All rights reserved. Restricted use only.