Navigating WNC’s long-term care options

Few words have the ability to inspire more fear, frustration and trepidation among older Americans across the country than “nursing home.”

“Everybody says the nursing home is where you go to die,” says Carol Ball, a resident of Weaverville whose younger sister, Barb Knight, has lived at the Madison Health and Rehabilitation Center in Mars Hill for the past three years. “To me, making that jump to [Barb] going to a nursing home was just horrible.”

Yet as the baby boomer generation ages, the pressure on families to provide care for their loved ones will likely lead them to lean more heavily on such facilities in the coming years. According to the U.S. Census Bureau, nearly 20 percent of Buncombe County residents are over 65 years of age, while 9.5 percent of those under the age of 65 live with a disability that may require higher amounts of care as they get older.

For those confronting the prospect of needing long-term care, a variety of care options and support services across Western North Carolina provides information to help residents find the best care available.

Where to start?

Navigating the health care system can be a challenge for anyone, but for those seeking long-term care for a family member, the process can be especially daunting. While the term “nursing home” is commonly used to describe a multitude of care options, there are stark differences in the types of services offered, based on a client’s needs, the length of stay and their financial situation, says Amy Fowler, a certified care manager and owner of WNC Geriatric Care Management in Asheville.

“Our society does a great job preparing for the beginning of life, but we don’t put much emphasis around the end of life or the years leading up to it,” Fowler says. “Our health care system is complicated, and families and clients do not have the time to become experts on aging.”

For those embarking on the process, just knowing where to begin can be daunting. Such was the case for Ball when the decision was made that Knight, who has cerebral palsy, could no longer live independently.

“Because my sister was so young, I was looking at any place that I could find — assisted living, nursing homes — anybody that would take her,” Ball recalls. “It’s more complicated than you would imagine; I didn’t really know what to do.”

Accepting that she could no longer live independently was a tough pill for the energetic Knight to swallow. “I lived by myself forever in Ohio,” says Knight, an animal rights activist. “The next thing I know, they brought me home to North Carolina, and I was catless. I was so mad at my sister and family.”

Despite her initial reluctance, Knight eventually came to enjoy living at the Hominy Valley assisted living facility in Candler (now known as Pisgah Manor), where she lived for several years. “I loved it there,” she says. “We knew the people who ran it, and I had my own room. They even painted it purple — my favorite color!”

Pay to stay

In Buncombe County alone, there are 20 licensed facilities that offer some form of assisted living. While costs often depend on the type of care required, a skilled nursing facility can average $8,000 a month for long-term residents, according to Andrew Atherton, an attorney at McGuire, Wood & Bissette who specializes in elder care law.

Contrary to popular belief, long-term stays are usually not covered by Medicare, says Haley Niebes, director of admissions and marketing for StoneCreek Health and Rehabilitation in Asheville. “Medicare only pays for short-term care, if you’ve gotten a hospital stay,” she says.

While some individuals are able to pay out of pocket or are covered by insurance policies, many people living in long-term nursing facilities rely on Medicaid to pay for their stay. According to Tina Wilson, income maintenance supervisor for Buncombe County Health and Human Services, her department served 1,155 clients who receive long-term care services in 2017. Of the nearly $293 million the county spent on Medicaid last year, $45.1 million was related to long-term care.

In order to qualify for Medicaid, however, patients must first exhaust their personal savings, notes Atherton. Generally, adds Kathleen Rodberg, another elder law attorney with McGuire, Wood & Bissette, a patient’s income must be less than a facility will get in reimbursement from Medicaid. She says that even on the low side, that cost will be upward of $4,000 a month.

Medicaid recipients are exempted $30 a month, which they can keep for personal expenses, according to Julia Gibson, an ombudsman with Land of Sky Regional Council who serves Buncombe County.

“That [amount] has not changed in decades,” Gibson notes. “It doesn’t cover much, especially if you’re a smoker, or buying Christmas gifts — it’s not like [residents] cease to become people with families and other outside interests when they go to the nursing home.”

For Knight, the establishment of a trust fund by her late father eased the financial burden on her family. However, her income level also excluded her from receiving financial assistance toward many local assisted living facilities, including Hominy Valley.

A wrinkle in time

Faced with having to find another facility for her sister, Ball began scouring the internet and reaching out to any local care facility she could find.

Both the N.C. Division of Health Service Regulation and the federal Centers for Medicare & Medicaid Services provide a rating system for skilled nursing facilities based on annual surveys of each location. These ratings offer a glimpse into a nursing home’s overall environment, says Gibson, including staffing levels, quality measures and state inspections.

“It’s just a snapshot,” Gibson says, “but it at least gives people something to go by.”

However, the ratings can also lead to misconceptions about a facility, says Tom Dula, administrator at The Laurels of Summit Ridge in Asheville. “Sometimes, an employee makes one mistake, and it can cause you to lose stars, but it doesn’t mean that you’ve stopped giving good-quality care,” he says. “We’ve been as high as five stars, as low as two stars, but our quality of care hasn’t changed.”

Delving into the details behind the ratings is where ombudsmen like Gibson come in. “Part of our job is to be a voice for those who aren’t able to advocate for themselves,” Gibson explains. “Another part is providing resources to people when they’re looking for long-term care.”

While Land of Sky publishes a long-term care directory online and in print for families, “mostly, we try to narrow it down for them, to talk about their loved one and what their needs are, and try to help them decide which facilities might be able to help them,” Gibson says.

Helping hands

In addition to the ombudsman, a host of local professionals can help ease the transition into a nursing facility, such as nonprofit advocacy groups, elder care attorneys and private care managers like Fowler.

Inspired to go into the field by her father’s end-of-life travails, Fowler says having a trained care manager by your side can make all the difference in a client’s quality of life. “Care managers are the certified experts in aging well,” she says. They can assist with creating a road map for future health care; connecting clients with the appropriate resources; managing schedules; and providing a conduit for communication among doctors, caregivers and the family.

For attorneys, practicing elder care law requires “the soul of a social worker,” Atherton says. “Your conversations are not, ‘Let’s execute X, Y, Z documents.’ There are a lot of emotionally charged decisions. You have to have that sort of underlying desire to want to help people.”

While the cost of hiring an attorney may seem unnecessary to some, Rodberg says it can save a lot of money (and headaches) in the long run. “It’s cheaper to pay us a little bit to do something that’s a simple fix,” she notes. “It’s just such an unfamiliar world; I wouldn’t expect any layperson — or for that matter, attorneys unfamiliar with the regulations — to get it right away.”

It was advice from a lawyer that eventually led Knight to her current home at Madison Health and Rehabilitation. “An attorney said to me, ‘Go and look at Mars Hill,’” says her sister. “I went out there, and they would accept Barb — even though she’s one of the youngest ones there. It’s a wonderful place.”

The business of aging

The complexities of modern-day nursing care aren’t just a challenge for clients and their families. Expanding options for home care and assisted living have changed the type of long-term residents who come to nursing facilities, says Dula.

“It’s caused us to take sicker patients, that may have some psych diagnoses or Alzheimer’s,” he says. “In the past, you’d get the nice little old lady with the fractured hip; now, we’re almost like a step-down hospital.”

In response, many nursing facilities increasingly emphasize their rehabilitation and short-term services, which are funded through Medicare and yield higher dividends than Medicaid payments, according to Dr. Cheryl Phillips, the recently retired senior vice president of public policy and health services for Leading Age, a nonprofit advocacy and support organization for older Americans needing long-term care.

It has also led to a rising number of nursing homes being owned by national franchises, Phillips adds: “There are about 15,600 nursing homes [nationally], and maybe 2,500 are nonprofits.”

With the exception of a couple of local nonprofit facilities, such as Deerfield Episcopal Retirement Community, and state-run homes like Black Mountain’s N.C. State Veterans Home, most skilled nursing facilities in the region are owned by franchises. Some, like StoneCreek, are part of locally owned chains; others, like The Laurels at Summit Ridge, are one of many facilities across several states.

“Unfortunately, a lot of facilities in our area are these large chains, and they’re not even operated from our area or even our state,” Gibson says.

Building community

While it’s easy to view all for-profit nursing facilities as money-driven, Phillips says most facilities want what’s best for their clients, even if they sometimes struggle to meet those needs.

“I believe that everybody can be doing something better, but there’s a good segment of nursing homes out there that are really doing pretty well,” she says. “Some of them do better in some areas than others. That’s why I think the best answer for families is to go and visit.”

Dula agrees that not all nursing facilities do a good job but says that’s where The Laurels franchise stands out from the pack. “Our mission statement is ‘exceeding the needs of our patients,’ so we try to determine exactly what they need and go a little bit above that,” he says.

This includes renovations to increase the number of private rooms at Summit Ridge, a variety of daily activities that range from the ever-popular bingo to trips to see Asheville Tourists baseball games, and staff members listening to residents’ input.

“We have a resident council group we meet with monthly to talk about whether there’s a special activity they want to do, or a special meal that they’d like,” says Dula. “I’m out on the floor a lot. If there’s any concern, they know where my office is and can come and talk to me.”

At StoneCreek, residents and staff work with community partners to provide training opportunities for students at A-B Tech and the Western North Carolina School of Massage, and to connect residents with the outside community, says Niebes. This includes an innovative partnership with Warren Wilson College on the Music Is Medicine program (see “Music as Medicine at Local Long-term Care Facilities,” Xpress, Nov. 10, 2016).

Making sure residents are active and engaged is a key indicator of whether a nursing home is doing well, says Gibson. “We all need to continue to participate in life and contribute somehow,” she says. “Do the people look happy? Are they well-groomed, out of their rooms and doing something important to them? Those are the things we tell people to look for.”

Regulations and retention

Whether for-profit or not, nursing homes must all navigate the same bureaucratic regulations set at the federal level. “We’re one of the most regulated industries in the United States,” says StoneCreek’s executive director, David Fardulis. “Regulations are constantly changing all of the time, [and] there’s not a ton of interpretive guidelines.”

While Phillips says “there absolutely needs to be a floor of regulation,” she notes that overregulation can be counterproductive to providing quality, person-centered care. “There are so many regulations that are so exact that if you don’t do it in the exact right way, you can get cited.”

With fines as high as $100,000, citations can actually do more harm than good for a struggling facility. “You have so many fines, people then end up taking away money from what you can do to improve,” Phillips says.

A shortage of qualified nursing staff also impacts nursing homes’ ability to provide quality care. “You can just drive by these places, and you’ll see a sign out in front of almost everyone that says ‘hiring CNAs,’” Rodberg says. “If they can’t find the staff to fill the empty spots, that puts a higher burden on the staff that is there, which burns them out, and you end up in this cycle.”

To combat this trend, places like StoneCreek go out of their way to make employees feel appreciated, hosting cookouts and special events for various staff throughout the year.

“They put a lot of time into that,” says Niebes. “We have great insurance, but we also do little fun things for the staff, just to make work more pleasurable.”

Settling in

Looking back on her and Knight’s personal journey, Ball says she wishes she’d utilized more community resources when searching for a home for her sister. “Finding somebody that you can trust that’s in the system, and knows how to work the system, is priceless,” she says.

Fowler says being proactive in one’s long-term care planning can also go a long way toward making the transition smoother for all involved. “Really think about what matters — your environment, interventions wanted/not wanted, how your medical team will work with you,” she advises. “And know that despite your plans, you may have to change them.”

Families should visit nursing homes in person, unannounced, says Phillips, and talk with staff and residents to get a first-person view of the facility. “There is nothing that replaces the sense of actually being there and looking for yourself, using your eyes and ears,” she says.

For her part, Knight’s advice to others in her situation is to keep an open mind and accept the changes that life presents. “Try to let go of the things that you love, like your pets, and just know that the situation — it might not be the best, and that’s why you have to move,” she says. “Let it happen. You can cry or gruff about it if you want to — that’s fine — but sooner or later, you’ll get used to your new place.”