Home health workers assist clients with daily tasks like bathing, dressing, toileting, walking and transferring out of bed; all things that require them to be extremely close to those they serve. In many cases, they also shop for groceries and pick up prescriptions and other necessities.

It’s a challenging time, but home health workers are committed to delivering quality care, said Pedro Zayas, spokesman for the SEIU Healthcare 1199 NE, which represents more than 5,000 independent personal care attendants.

“Our providers are people who went into this field because they like caring for others,” he said, adding that caregivers are diligent about self-monitoring for fever and other symptoms.

Cases of the highly contagious coronavirus continue to spike in Connecticut and nationally, with elderly people being particularly susceptible. To prevent the spread of the virus, health care experts recommend that people practice social distancing, staying 6 feet apart.

Dr. Mary Tinetti, chief of geriatrics at the Yale School of Medicine, said seniors using home health care should consider whether they can temporarily go without some services.

“There’s no question prevention is all about social distancing and washing. Both those things are a little difficult when you have home health aides coming in. This might be a time to look into what direct care is needed. For instance, people may not need to bathe every day. That’s going to be very direct contact. Maybe they can go down to a couple of times a week.”

— Dr. Mary Tinetti

Lynette Dockery of Meriden, a home health aide who works six days a week, is diligent about washing her hands, wearing gloves and masks, and using hand sanitizer. She says, however, supplies are getting low.

“We don’t have supplies. I have a few masks. We’re asking the state for more supplies,” said Dockery, a home health aide for nearly 20 years. “I don’t know what else we can do. It’s a really hard situation right now. It’s getting worse and worse every day.”

She worries about getting her client sick or becoming sick herself, as social distancing is impossible in her work. One of her clients is on dialysis and has a stent in her chest.

“We can’t stay 6 feet away from our consumers,” she said. “I have to bathe her. I have to do all her personal care. I make her dinner, get her dressed.”

Nationwide, there were about 12,200 home health agencies, employing the equivalent of 145,000 full-time workers in 2016, the most recent year for which data is available. In addition to daily care, about 96% provided some therapeutic services, while 83% provided social work services, according to a 2019 study by the National Center for Health Statistics.

An increasing number of Connecticut residents receiving Medicaid rely on in-home care, according to a 2019 Department of Social Services study that projected 82% of long-term care enrollees will use home care by 2040, up from 68% in 2017.

Linda Grigerek, president of Companions & Homemakers, which has 11 Connecticut locations, said, “Our caregivers have really stepped up. Caregivers are self-reporting any potential exposure to the virus and other illnesses, and self-quarantining to protect clients,” she said. Some who provide live-in care have sacrificed previously planned time off to instead stay with clients.

Grigerek’s agency has directed all caregivers to adhere to Centers for Disease Control and Prevention (CDC) guidelines during the pandemic.

Nonessential Care Sidelined

Home health care workers have already started to see decreased demand for their services as worried seniors forego services.

“A lot of our clients who receive nonessential care, most of those people are just canceling,” Grigerek said, predicting business likely will dwindle to only serving clients who need essential services. “Those are the people that we’re worried about.”

As elderly clients scale back on services, home health workers, who make minimum wage or close to it, could have trouble making ends meet, Zayas said.

“These workers don’t have sick leave. If you don’t show up, you don’t get paid. And if you get sick, you don’t have sick pay.” As income dries up, more aides could struggle to pay for hand sanitizer, masks and other supplies. “Inventory is not even available. Those are huge concerns.”

— Pedro Zayas

About 80% of home health aides are women, Zayas said. Some are single parents who are trying to balance work with caring for their out-of-school children and now face the possibility of reduced or no income.

Dockery, who lives with her 20-year-old son, is the sole breadwinner in her home.

Tinetti said seniors who have aides in their homes should remind them to wash their hands before and after each encounter and to disinfect surfaces repeatedly.

“We all need reminders to do it,” she said. “Older adults should feel empowered to remind them.”

Seniors also can ask care workers for suggestions to creatively engage with them from a safe distance, Tinetti said. For example, taking a walk outside, singing or dancing. Also, those who receive care from multiple aides can ask if just one aide can serve them for now.

“If it’s scary for us [aides], I can only imagine what it’s like for them,” Dockery said of seniors receiving in-home care. “When you’re in a home setting, they depend on you to lift their spirits and take care of them.”

Dockery said her job is “God’s work.”

“If I don’t go [to work], how’s she going to get to dialysis?” she said. “That’s life-saving; that has to get done.”

Just one agency, McLean Home Care & Hospice in Simsbury, received the highest rating of five stars; three agencies, including the Lighthouse Home Health Care in Old Saybrook, received 4.5 stars; and eight received four stars. Nationally, as in Connecticut, a majority of the agencies fall “in the middle” with a three or 3.5 star rating, the data released in late January show. Of the 12,201 home care agencies rated nationally, only 2,512 received five stars.

Patricia Adams, administrator for home care and hospice at McLean Home, said, “Our team is really thrilled” with the five-star rating. “It’s taken a lot of hard work and heart, year in and out.”   The agency also received above average patient satisfaction scores.

The new five-star rating system, first unveiled last summer, is based on nine of 29 quality measures, including starting care in a timely manner, educating patient and caregiver about medications, and patient outcomes such as improved mobility in walking, getting in and out of bed, bathing, and no hospital readmission.

Jennifer LaRue Photo.

Florence Jamieson, 95, gets checked by Darcy Ingres, a Farmington VNA nurse. The agency received an overall four-star rating.

As the state’s population ages and the length of time patients spend in hospitals and rehabilitation centers grows shorter, more families and individuals find themselves needing home health care services. The new tools are designed to bring more transparency for consumers tasked with making home care decisions.

“Home health care provides care at the lowest cost setting, compared to hospitals and rehab facilities,” said Deborah Hoyt, president and CEO of the Connecticut Association for Healthcare at Home in Wallingford. “Patients are happiest at home, outcomes are better and quicker, and there are fewer infections. And your own family members are around you. They can be trained how to continue the therapy and perform tasks such as changing bandages.”

But even such a seemingly objective system can be imperfect, Hoyt pointed out. The rating system assesses the cost appropriateness of services, measuring how well providers use money and resources. The system also measures patient outcomes. “Some may never get better or cured, but they may become stable. The rating system may not always allow for that positive outcome to be read as such,” Hoyt said.

The new data also includes for the first time a consumer assessment of care.

On the post-care survey, Hoyt said, “This part is based on human perception, and some people are harder scorers than others.”

“Connecticut is a very tough state to do business in” because of its stringent regulation of home health care services. There’s also a lot of economic disparity that influences the kind and quality of care patients have access to. Given all that, Hoyt said, Connecticut home care agencies are in line with others nationally.

Lee Bridgewater, administrator of the 4.5-star Lighthouse Home Health Care in Old Saybrook, said the ratings are of particular use to people from out of town or out of state who are researching options for their aging parents. Reviewing the ratings allows them to learn, for instance, “how quickly care is initiated after discharge from the hospital,” she said. “That’s one [of the criteria] that helped us get the 4.5 stars.”

Bridgewater said of the rating system, “We take it very seriously and work hard to maintain our rating. That’s a real team effort on the part of the staff, and it reflects on the quality and hard work we do.”

Mark Appellhof, director of sales and marketing for Visiting Nurses of the Lower Valley, said receiving a 4.5-star rating gives the agency “bragging rights.”

“When you’re matched up against the competition and you get recognition like that, you toot your own horn,” Appellhof said, adding that he will incorporate that distinction in his outreach to referral sources such as hospitals and physicians.

Appellhof said that the agency posts its rating in the lobby “so as the public and nurses come in, they see how we’re doing.”

“Of course, as with any measurement tool, there’s going to be some subjectivity to it. But as an overall barometer of how an agency’s doing, it’s fairly accurate,” he said.

Adams said, “The star rating system not only lets consumers see that we’re at the top of our game, but it also tells our team what they have to do to stay there.” For instance, Adams said, data recently revealed “a few more readmissions over the past quarter,” a cause for concern that the agency is taking steps to remedy. “We’re constantly trying to look at the numbers and how we can improve,” she added.

Kate Jones, chief clinical officer at Amedisys in Baton Rouge, La., whose Stamford facility received a four-star rating, said consumers are starting to use the Internet to access rating information. She noted that a patient who used Medicare.gov to compare home health care agencies found that Amedisys was among the best rated in the area.

“I promise you that the staff in Stamford is working toward five stars,” Jones said. “That’s what Medicare intended—the rating system is a quality improvement effort. If you want to demonstrate that you provide quality care, but you don’t improve while other providers do, your star rating will slip.”

In the end, Jones said, the star rating system makes for “a better informed consumer who is ready and willing to be engaged in their own care. That sets us up for success.”

New federal data show Connecticut has 86 Medicare-eligible home health providers, the second highest number in New England after Massachusetts. Most providers are concentrated in western part of the state, with only seven in Windham County and 10 in Tolland County. New Haven County has 42, Middlesex County, 20.

To find star ratings and other care ratings for home health care agencies, go to c-hit.org/data-mine/home-health-agencies.

Perhaps the most remarkable thing about this treatment is that it’s happening in Taber’s Hamden apartment – not a hospital. Like many Connecticut residents, Taber depends on home care.

But as reliance on home care grows, inspections of agencies in Connecticut are backlogged, and the state rarely imposes financial penalties on agencies found with patient-care violations, a review by C-HIT has found.

The state is about six months behind in inspections of these agencies, according to its own and federal standards. Inspections typically turn up lapses in patient care and documentation.

But even when such inspections find problems, agencies are almost never penalized for those violations because the Department of Public Health (DPH) lacks the statutory authority to impose fines, a spokesman for the department said.

In a 2011 inspection report, the Berlin Visiting Nurse Association was cited for violations that included not following physician diet orders, failing to test blood sugars on a diabetic, failing to get social work help after observing volatile family dynamics, and failing to obtain safety equipment for a patient that was ordered by a nurse. No fine was assessed.

“The issue is the authority that the department has to issue those civil penalties.  We don’t have the authority to do that [impose fines], ‘’ said William Gerrish, spokesman for DPH.

Nationally, states “do have the capacity to issue fines for home health violations,” said Roseanne Pawelec, a spokeswoman for the Centers for Medicare & Medicaid Services (CMS) in the New England region. While some states do impose such penalties, none of the New England states routinely fines home health agencies, she said. CMS is drafting regulations regarding penalties and enforcement for home health agencies, she added.

Judith Stein, executive director of the Willimantic-based Center for Medicare Advocacy, says it would be ‘’wise’’ to give DPH the power to impose fines.

“If you have only a hammer and no smaller little cudgel to use—that is, your only penalty is to not license an agency—very often it means nothing happens. I know that access to home care, because of staffing concerns, is something we need to worry about. Nonetheless we want access to good home care,” said Stein.

She said that inspections are also crucial. “At home a person is completely at the mercy of when the staff comes and what they do when they’re there…Often, there is no one there to observe and protect,’’ added Stein.

Under federal rules, all Medicare-certified home health agencies must be inspected at least every three years with the inspections usually done on the federal government’s behalf by DPH.

In Connecticut, DPH inspects an agency every two or three years, depending on its federal status. Re-licensing has been delayed for the past six months, with 12 of the state’s 98 agencies overdue for inspections, according to Gerrish.  He said the inspections should be back on schedule within two months, as the department implements new management practices.

Although the state department has authority to impose fines on other health care providers, such as nursing homes, DPH does not have such statutory authority when it comes to home health agencies, according to Gerrish.  Instead, in cases of serious violations, DPH may enter into a “consent order” with an agency, in which the provider pledges to follow a corrective action plan and may also pay a fine.  Serious violations also can lead to a loss of Medicare certification.

Medicare terminations and consent orders are rare in Connecticut, however. The last consent order involving a home health agency was issued in January 2010. That agency, American Home Health, Inc. of West Hartford, agreed to a quality improvement plan, but paid no fine.

Hospital Readmissions

Thomas MacMillan Photo.

 

The federal Agency for Healthcare Research and Quality, an agency that tracks data on health care quality, safety and cost, rated Connecticut as “very weak” in home care, citing measures such as medication management, improvement in mobility and hospital readmission as problems in care.  Industry officials questioned that rating based on the age of the data released this summer, which goes back to 2006.

Deborah Hoyt, president and CEO of the Connecticut Association for Home Care & Hospice, cited a more recent study by the American Association of Retired People that ranks Connecticut in the top quartile for long-term care. But in that report, Connecticut ranked 45th on the measure of hospital readmissions for patients in home care, a key category. The federal government estimates the cost of a single readmission at $5,700. AARP projected that more than 2,000 hospital readmissions could be avoided annually if Connecticut improved its performance.

Keeping a patient safely at home requires communication between hospitals, home health agencies, primary care doctors and community services, said Ann Spenard, director of business development at Qualidigm, a research and quality improvement organization in Rocky Hill.

Pilot programs around the state are working to improve coordination. Spenard points to one project to manage congestive heart failure, the most common cause of hospital readmission. Now participants use the same education materials so that patients don’t get mixed messages, according to Spenard.

Growth Industry, Declining Revenues

Home care is a growth industry because of an aging population and the movement of patients out of institutions.  But agencies are challenged by shrinking reimbursement and by competition to recruit staff. Most consumers do not know how to shop for services – or even that shopping is an option.

The agencies once made a profit on Medicare clients, but declining federal reimbursement has changed that.  Medicare clients essentially subsidized Medicaid clients, whose care is reimbursed at a much lower rate. For-profit agencies can refuse to take Medicaid clients, but for non-profits, “it’s their mission to take every patient,” said Hoyt.

Payment happens after services are rendered, if at all. Medicare and Medicaid randomly review case files to determine if a patient received the appropriate services. If the review finds that visits were too frequent or included too many specialized therapies, the federal government demands a refund. Those givebacks can run to six figures, according to Hoyt.

Small non-profits are most vulnerable to these financial stressors. A New Hampshire study of 58 New England visiting nurse associations projected that 47 of them will lose money this year. By 2015, it predicts 57 will be in the red. A recent study commissioned by the National Association for Homecare and Hospice showed that the majority of home health providers would lose money on Medicare patients under proposed reimbursement changes. Agencies took an overall 3 percent cut from Medicare last year and expect another 5 percent cut Jan. 1, according to Hoyt.

Nevertheless, new players enter the market in response to demand. In a typical year in Connecticut, about 30 people or entities begin the licensing process. Anyone can open an agency, provided they hire staff with the requisite qualifications.  Owners of home care businesses in Connecticut include registered nurses, holding companies and the Government of Dubai.

Experienced Nurses Only

Thomas MacMillan Photos

 

Despite financial pressures, agencies must compete with hospitals, where pay is generally higher for a skilled workforce. Monica Still, a nurse with 25 years’ experience in home care, knows how difficult that can be. She became acutely aware of the problem recently as a home care patient. It took a month to get the physical therapy visits her doctor had ordered, said Still, a board member of the Connecticut Health Policy Project.  Agencies need to have a workforce of speech, occupational and physical therapists, aides and nurses.

Recruiting just any nurse will not do. “For home health providers there is a need for nurses with solid experience,” said Kathryn Roby, a consultant with Qualidigm. They often must make judgments independently and work with patients who are acutely ill.

Much of the hands-on care in the industry is done by home health aides. The last training program for home health aides in the state closed with a reorganization in the community college system. So the workload has shifted to patient care assistants with retraining to work in the home environment.

Connecticut College Professor of Economics Candace Howes studies the long-term care workforce and argues that paying workers well translates into better patient care. In a California study, she linked low wages to high turnover, which she demonstrated was associated with more falls and trips to the emergency room.

Putting Patients In Charge

Thomas MacMillan Photos

 

Taber is a cheerleader for VNA Community Healthcare, the agency that serves her. For many patients, however, the choice of a home care agency is made in a time of crisis with little information.

Often patients simply sign on with the agency recommended by the hospital that is discharging them.

“The patients don’t have a voice, and that’s what’s wrong,” said Still.

Putting patients in charge of their own care is key to improving it, said Roby. “What (patients) grieve most is the loss of control,” she said. Roby offers training to help nurses work with patients to set their own goals. Something as simple as being able to get the mail can motivate a patient to do difficult exercises, she explained.

An emergency room nurse may save a patient’s life, said Roby. But she added: “Now that you’ve saved his life, we have to teach him how to live it.”

When patients live their lives at home, rather than in institutions, health care spending drops.

For Taber being at home is a tremendous quality of life boost. “If it wasn’t for the VNA, I would be in a nursing home,” says Taber. In addition to the wound vacuum, she has a feeding tube, a catheter and a pump for pain medication.

Her husband, Dave, manages most of her care, with help from visiting nurses and from aides. The Tabers joke that their home looks “like CVS,” because of all the bandages, creams and so forth. But in many ways, life seems quite normal as Judy and Dave quip about the room temperature and her penchant for shopping on QVC.

“If he wasn’t by my side, I would die,” she says in a serious moment. “I love this man.”