Sunday, January 10, 2016
Lebanon — Paul Mason graduated from Lebanon High School in 1951, the year it marked its diamond anniversary. As a volunteer firefighter, he battled the great Lebanon fire of 1964. And in 1993, he retired after three decades of work at Split Ball Bearing.
And then, suffering from Parkinson’s disease, kidney ailments and a rare form of dementia, Mason entered a stage of life where he required a great deal of care from others.
At first, his wife and daughters gave him that care in the family home on Hardy Hill. But eventually, remaining at home became too dangerous. Mason wandered. He could no longer safely use the wood-fired boiler he had installed. His health worsened.
“We kept him home as long as possible,” said Marlene Green, Mason’s daughter. “It was just so overwhelming.”
When Mason’s kidneys failed, he was ready for the end-of-life care known as hospice. His family moved Mason to the Grafton County Nursing Home in North Haverhill.
Green’s sister stayed with Mason through his first day at the Grafton County home, anxious to ease his transition. His daughters experienced their own painful transition.
“It was probably the hardest thing that either one of us has had to do, because he wanted to go home,” Green said. “We just drove home in silence. It was horrible.”
Entry into a nursing home is a difficult passage for many families. The cost can be prohibitive. Consumers frequently express a desire to never end up in one. And there’s no shortage of anecdotes or data showing that care at some nursing homes is inadequate, or worse.
“If you ask people where they want to be, they want to be at home,” said Jackie Majoros, the official long-term care ombudsman for the state of Vermont.
That’s a key reason why state officials and caregivers in both Vermont and New Hampshire have made it a priority to offer care at home to seniors and others with serious health problems who find it difficult to live on their own.
Yet skilled nursing facilities, or nursing homes, will continue to play an important role in providing long-term care for seniors and other people with disabilities. Said Majoros, whose job it is to assist and advocate for nursing home residents: “There’s always going to be a need for quality nursing home care, without a doubt.”
And for those families that find themselves choosing among the long-term care options, dealing with emotional turmoil like that faced by Mason’s family is just one of the challenges. Seeking long-term care may seem like entering a separate universe. Health and financial criteria must be weighed alongside personal preferences. An array of unfamiliar programs, services and facilities must be explored, and new caregivers arranged. All this takes place within a maze of laws, regulations and market forces populated by a dizzying lineup of for-profit and nonprofit private entities and governmental agencies with confusing jurisdictional boundaries and mystifying functions.
Nursing Homes And Long-Term Care
About 12 million Americans receive long-term care — services that extend for at least nine months and help individuals with serious physical or cognitive limitations cope with health-related and other challenges of daily life — in communities or in nursing homes or other institutions, according to a 2013 report to Congress by the federal Commission on Long-Term Care.
Many, but not most, Americans who require long-term care get it in nursing homes. In 2013, such facilities had about 1.4 million residents, according to the U.S. Centers for Disease Control and Prevention. There was one nursing home bed for every 186 Americans.
Vermont had an inventory of about 3,200 nursing home beds, or one for every 196 Vermonters, according to the CDC. The state’s nursing homes had about 2,700 residents.
New Hampshire had about 7,510 nursing home beds, or one for every 176 residents, according to the CDC. The state’s nursing homes had about 6,800 residents.
A Complex System, Stressful Circumstances
Entering the long-term care system often is a daunting exercise, according to the U.S. Administration for Community Living, because it “involves numerous funding streams, and is administered by multiple federal, state and local agencies using complex, fragmented and often duplicative intake, assessment and eligibility processes.”
Evaluating long-term options proved overwhelming for Deb Fennell, of Jeffersonville, Vt., despite her familiarity with complex programs that she acquired through work: She processes applications for Social Security Disability Income. She had to arrange care for her 90-year-old father after his March hospitalization for a broken leg.
“You’re in the midst of it,” she said. “You’re trying to educate yourself while dealing with all the emotions.”
Paul Mason’s family encountered its own challenges when it came to placing him in a nursing home. “In our case, it came up kind of suddenly,” said Green, who lives in Lyme and works as an administrator at Granite Value Capital in Hanover. “And we were faced with having to make a decision fairly quickly.”
The members of Mason’s family scrambled to make sense of their options.
“My sister and I, we asked questions, we went out on the Internet, we spent just enormous amounts of time talking and figuring out what to do, and there were some really hopeless moments,” Green said. “But we sort of slogged through it.”
“It’s not for the faint of heart,” she added. “There’s a lot to it.”
Medicaid (Often) Picks Up the Tab
Money is a big concern, of course.
Fennell recalled wondering, “Who pays for this? How’s it going to be paid for?”
In many instances, especially when care is provided in nursing homes, the tab is covered by the Medicaid program, which provides federal support to states that offer insurance to low-income residents. States can use Medicaid funds to pay for long-term care for seniors and some people with disabilities, so long as the recipients meet medical and financial criteria.
In fiscal 2011, about $52 billion from Medicaid paid for services and support for residents of skilled nursing facilities and retirement communities, the Kaiser Family Foundation reported.
Long-term care providers in the Twin States generally depend on Medicaid for revenue. In August, just over 60 percent of the 80,000 days of care provided to residents of Vermont nursing homes were paid for by Medicaid. In New Hampshire, Medicaid accounts for about 65 percent of the revenue of the state’s nursing homes, according to a recent presentation by nursing home operators’ associations.
The relationship between Medicaid and individual providers is complex.
At the end of 2015 in Vermont, the daily rate that Medicaid paid for nursing home care ranged from $157 at the Newport Health Care Center to $263 at the Woodridge nursing home in Berlin. Vermont sets rates each quarter after reviewing each home’s accounts and calculating allowable costs for various components of skilled nursing and related care.
New Hampshire uses a similar formula to calculate the daily rate it pays to support nursing home care for Medicaid recipients, but supplements that revenue with federal money generated through a complicated mechanism that includes a provider tax on nursing home services.
Medicaid provides a financial backstop to seniors and others who need high levels of long-term care. “Because nursing homes cost so much — thousands of dollars a month — most people who live in them for more than six months cannot pay the entire bill on their own,” according to the National Institutes of Health. “Instead, they ‘spend down’ their resources until they qualify for Medicaid.”
But care providers have financial incentives to provide as much non-Medicaid care as possible, because Medicare generally pays a higher daily rate than Medicaid. The 1965 law that created Medicare, the federal health insurance program for seniors, limited its spending on nursing care to short-term rehabilitation.
And patients who can afford to bear their own costs pay even more. For example, at the Grafton County Nursing Home, where about four out of five patients are covered by Medicaid, those who pay their own way are charged $275 a day for a shared room and $295 for a private room. At Sullivan County Health Care, the private pay rate is slightly higher: $285 a day for a shared room, $315 for a private room. The daily revenue generated by a Medicaid patient generally is about $30 to $40 less, said Ted Purdy, the administrator at the Sullivan County home.
Some patients and their families believe that doors were closed to them because they planned to use Medicaid coverage for care.
For example, when Mason was ready to be discharged from the hospital and his family sought to place him as a Medicaid patient in a nursing home, they were told “absolutely, unequivocally no,” Green said. Another nursing home informed them that he might get in, but only after a long wait. Eventually, hospice workers helped Mason find a place in the Grafton County home, Green said.
Medicaid patients are supposed to have access to the same care available to patients who bring in more revenue, according to Don Rabun, New Hampshire’s long-term care ombudsman.
“Under New Hampshire law you can’t refuse a Medicaid recipient,” he said. The Ombudsman’s Office will investigate any allegation that such a refusal has occurred, he said.
During his 13 years on the job, Rabun said he had received only “seven or eight calls of that nature.” New Hampshire nursing homes don’t have limited numbers of “Medicaid beds,” and any nursing home that refused to give a Medicaid recipient access to an otherwise-available bed would be asked by his office to explain itself, he said.
Rabun said that anyone who thought they or a loved one had been denied a New Hampshire nursing home bed because the patient was a Medicaid recipient should notify his office: “I can’t fix what no one tells me.”
(The state long-term care ombudsman in New Hampshire can be contacted by telephone at 603-271-4375 or by visiting his website at www.dhhs.nh.gov/oltco/index.htm, while his Vermont counterpart can be reached by telephone at 1-800-889-2047 or by visiting her website at http://www.vtlegalaid.org/vermont-long-term-care-ombudsman.)
Others have a darker view of the care available to low-income people.
“We know that Medicaid patients are discriminated against,” said Charlene Harrington, a nursing home expert and retired professor at the University of California San Francisco. “Once you do find a quality nursing home, you can’t get them in.”
Majoros, Vermont’s long-term care ombudsman, noted that her office sometimes receives complaints from Medicaid recipients about admission waits.
“We’re not getting complaints from people who are private pay,” she said.
According to reports filed with the National Ombudsman Reporting System, New Hampshire and Vermont each received one complaint of admission discrimination against a Medicaid recipient during the fiscal year that ended Sept. 30, 2014.
Mason’s family, as it turns out, used Medicaid and had a good experience. Green said that no financial or logistical problems arose during the final weeks of her father’s life, which he spent in the Grafton County Nursing Home: “My father was on Medicaid, and we had no issues.”
Care at Home
Both Vermont and New Hampshire have launched efforts to make long-term care more easily accessible in patients’ homes and communities.
That approach partly reflects pressure states are feeling to rein in the costs of spending on long-term care. It also responds to the widespread desires of patients and families to avoid placements in nursing facilities whenever possible.
“People want to stay at home,” Majoros said.
A 2005 law in Vermont gave Medicaid recipients the right, or entitlement, to choose to receive long-term care outside of nursing homes.
That entitlement exists under the umbrella of a $180-million-a-year program called Choices for Care, which was launched in 2005 after the U.S. Centers for Medicare and Medicaid Services approved Vermont’s application for a waiver that made it easier for the state to spend Medicaid dollars on long-term care outside of traditional nursing homes.
The program “opens the door for people to provide care for their loved ones at home,” said Gary Hilliard, case management supervisor at Senior Solutions, a state-designated agency serving seniors in Windsor and Windham counties.
Through Choices for Care, Medicaid recipients can receive a range of services — personal care, companionship, adult day care, respite for family caregivers, emergency response availability and help paying for assistive devices and home modifications — at home or in community centers. The program also encompasses most state spending to support patients in nursing homes and in some assisted living facilities.
Hilliard said that when patients enter Choices for Care, they choose either their local aging services agency or a visiting nurse organization to supply a case manager who will meet with them monthly. The manager completes a 28-page assessment to determine the number of hours of care that the patient will need. Patients also decide whether to manage their own care, rely on a relative or other surrogate, or have their care directed by an agency. In some cases, a patient can be eligible for up to 720 hours of annual respite care, which could be a short-term stay in a nursing home or other residential facility.
Currently, more than 3,800 Medicaid recipients participate in Choices for Care, and a majority live outside of nursing homes. For nearly five years, there have been no waiting lists for Medicaid recipients seeking to enter the program, according to the state.
Choices for Care also serves about 1,600 moderate-needs residents who do not yet meet Medicaid health or financial criteria. In July, nearly 500 Vermonters who were seeking care but not eligible for Medicaid remained on waiting lists, according to a state tally.
During the decade that the program has been in place, the statewide inventory of nursing home beds declined to 3,074 from 3,419, the occupancy rate decreased to 84 percent from 93 percent, and the portion of nursing home residents supported by Medicaid declined to 63 percent from 69 percent, the report found.
In July, a data report compiled by Vermont officials noted that under Choices for Care, “nursing homes beds are unused and available for people who want them,” but that “some people with challenging needs do have difficulty in accessing nursing homes.”
In 2002, New Hampshire began a less-ambitious program that allows some elderly and chronically ill Medicaid recipients to opt for services outside of nursing homes. Eventually dubbed “Choices for Independence,” the $56-million-a-year program now covers home and community care for 2,900 Medicaid recipients who receive long-term care services outside of nursing homes.
Green, the Lyme investment administrator, turned to Choices for Independence five years ago when she was seeking assistance while her family cared for her ailing father. Enrollment “was an enormous amount of work,” including gathering information that showed he met Medicaid criteria and arranging permissions for state officials to talk to his doctors, she said.
Choices for Independence supplied in-home caregivers that would stay with her father and her mother, who also had health issues, help with housework and take them to doctors’ appointments. The program also arranged Lifeline, or emergency response, services for her parents, Green said.
Unlike its Vermont counterpart, Choices for Independence does not give Medicaid recipients an entitlement to home or community services.
Still, Choices for Independence filled a critical need for Mason. “I don’t know what we would have done without the help of the various agencies” whose services were arranged and paid for by the program, Green said.
Some C omfort
Paul Mason died March 1, 2014. His final weeks were lived in the Grafton County Nursing Home. And that left Green, his daughter, with mixed feelings.
“It’s an institution,” she said of the county-operated facility. “It’s a big building. They care for a lot of people there.”
She added: “It wasn’t a real warm, inviting atmosphere, but human-wise they did the best that they could do.”
Green and the other members of her family appreciated the attention that the staff there gave her father.
“We were grateful that there were people that were taking such good care of my Dad,” Green said. “It gave us a sense of comfort in a situation that’s not very comforting.”
Rick Jurgens can be reached at rjurgens@vnews.com or 603-727-3229.
This story is part of a project that is supported by a Health Care Performance Reporting Fellowship from the Association of Health Care Journalists and by The Commonwealth Fund. If you have experiences receiving or comments about nursing home care in Vermont or New Hampshire, we invite you to complete the questionnaire posted at http://bit.ly/1OUeygT.