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Vermont pilot tries home care for frail elderly and disabled

Physicians take advantage of Medicaid's increased interest in community care settings

From the March ACP Observer, copyright 2007 by the American College of Physicians.

By Jessica Berthold

Keith Michl, FACP, a general internist specializing in geriatric medicine who runs a solo practice in Manchester Center, Vt., knew that one of his patients—an elderly woman with arthritis, lung disease and dementia—would be happier at home than in the nursing home where she was then living. A year and a half ago, the nursing home would have been this patient's only guaranteed option, but thanks to an innovative new Medicaid program, the patient's niece received financial assistance to care for her aunt at home.

"The aunt was a very frail lady, and the waiver allowed the niece to move in and care for her," Dr. Michl said. "She [the niece] got paid as a caretaker part of the time, and was able to use adult day care and respite care as well."

Vermont's Choices for Care, a Medicaid waiver introduced in October 2005, allows the elderly and disabled to hire relatives or others as personal care attendants for about $10 an hour. The waiver program, which serves nearly 4,100 people in the state, is the first in the country to give Medicaid clients an equal choice between being cared for in a nursing home, a residential facility or at home.

The Vermont program is being closely watched by the CMS and other states under pressure to contain the rising cost of caring for the frail elderly and disabled. In January, the CMS awarded $23 million in grants to 17 states for demonstration programs that would move people from nursing homes to community care in 2007. CMS plans to award a total of $1.75 billion in grants over the next five years for such initiatives. (See sidebar "CMS offers 17 states demonstration awards")

Home care arrangements don't always work out long-term—Dr. Michl's elderly patient ended up returning to a nursing home after about eight months because the niece had trouble dealing with her aunt's dementia. Yet Dr. Michl, who has about 10 patients enrolled in Choices for Care, doesn't view the case as a failure.

"If there is a possibility a patient can remain at home, it is always worth trying. Patients and families greatly prefer it," Dr. Michl said. "And I think the state of Vermont probably saved an enormous amount of money having these patients at home compared to being in a nursing home."

The physician's role

Though home care programs aren't medical in nature, doctors need to know about them because a patient's home environment is an important piece of overall health, said David B. Reuben, FACP, Board Chair of The American Geriatrics Society and director of the geriatrics program at the David Geffen School of Medicine at UCLA.

"Knowing what a patient's options are in terms of where he or she lives is no different than knowing what the options are for treating hypertension," Dr. Reuben said.


Keith Michl, FACP, speaks with Bo Ference about the care of his elderly mother.



A lot of doctors don't know about Choices for Care, because it doesn't deal explicitly with medical care, said Mary Woods, RN, a long-term clinical care coordinator with Vermont's Department of Disabilities, Aging and Independent Living (DAIL). Currently, Vermont's long-term clinical care coordinators are doing outreach with doctors' offices about the program.

Internists mainly just need to be aware the program exists, said Dr. Michl, who often refers patients to one of the Visiting Nurses Agencies in the area for information about Choices for Care.

"I don't really have the time or expertise to figure out if a patient meets the clinical or financial criteria myself, but I'll say 'Ok, you're at home right now, let's see how much in the way of home services you can find', and make the referral," Dr. Michl said. "Just as physicians are often late to recommend hospice, we may be late in asking families to get evaluated for long-term care assistance in the home."

And as CMS starts handing out more grants to states that are considering their own long-term care initiatives, physicians should think about getting involved, Dr. Michl added.

"It's really important for physicians to advocate that their states get similar programs to help diminish the crushing effects of state and federal Medicaid expenditures for long-term care," Dr. Michl said.

How it works

The program's savings add up. Nursing homes cost about $6,000 per month per resident in Vermont, compared with $3,386 for home-based care and $1,861 for assisted living. The money Vermont has saved by shifting some of its highest-needs clients from nursing facilities to home and assisted-living care has allowed the state to provide care to more people.

A client's need is determined by one of the state's 13 nurse assessors, who walk the client through a series of daily living activities, such as bathing and dressing, to see where the person might need help. Those deemed "highest needs" are guaranteed care, while those deemed "high needs" are put on a waiting list for services if funds aren't available. When Vermont started its waiver program, it reduced its waiting list significantly, though the list crept up in ensuing months. In January 2007, however, the state was able to provide funding to everyone on the waiting list as a result of savings.

Once on the program at the "highest needs" level, a client decides on the setting where she would like to receive care. About 37% pick home-based care, 57% pick nursing facilities and 6% pick assisted living. If a patient chooses personal care at home, a second assessment is done to determine how many hours of help she might need to eat, brush teeth or dress, for example. Most people get 20-30 hours a week.

Caregivers can't be paid for 24-hour care, which some observers have seen as a potential drawback to the program. Vermont currently has two pilots in place to test that option, which would involve paying a daily, not an hourly, sum of about $150 per person, said Lorraine Wargo, director of the Individual Support Unit in Vermont's DAIL. That amount would cover case management and other expenses, not just personal caregiver hours, she said.

"In one pilot, the agency contracted with a 24-hour caregiver to come into the home as a live-in with a daily stipend, and the person was also given room and board," Ms. Wargo said. "There have been some challenges, but it seems to be working."

Change is also in the works on another restriction: Spouses currently aren't allowed to be paid as personal caregivers under federal law.

"CMS has given us tentative approval to change that," Ms. Wargo said. "We are fine-tuning the procedures now."

Quality of care questions

Vermont health professionals are mostly sanguine about the program, noting the state is saving money and clients are happier. Physicians outside the state are intrigued by the idea as well, but wonder if the quality of care is as good at home as it might be in a nursing facility.

Caroline Blaum, MD, a geriatrician and associate professor in the Department of Internal Medicine, University of Michigan Geriatrics Center, said the program sounded like a great idea overall. She noted, however, that it might make more sense to treat certain patients in a nursing home.

"For someone with advanced dementia who needs 24-hour care, or someone who has a bad stroke or horrendous arthritis and it takes two people to move them, you really wouldn't be able to have just one caregiver doing it for eight hours a day," Dr. Blaum said. Other physicians voiced similar concerns.

If a case manager believes it would make more sense for a client to live in a nursing home, she can talk to the client, said Ms. Woods. Ultimately, however, people have a right to do what they want, as long as it doesn't drift into the realm of self-neglect, she said.

"Some clients with normal cognition but physically bed bound prefer to live at home alone," said Ms. Woods. "One client kept a cooler by her bed in case the electricity went out. It's pretty extreme but that's the name of the program: you choose where you would like to receive your care."

Another issue, said observers, is that caregivers often lack training. Though Medicaid waiver clients have the option of going through a home health agency to find a caregiver, 65% choose to hire someone directly—usually a relative or friend. The state doesn't require such employees to have any training, though they must get criminal background and abuse registry checks.

Case managers are meant to ensure people get the care they need, Ms. Wargo said. The managers are allotted 48 hours a year—or four hours a month—to visit patients, but they are allowed to apply for more time if they think it's necessary.

And caregivers hired through agencies don't always have much training, either, noted Dr. Reuben, of UCLA.

"Just because someone comes from an agency doesn't mean they are well trained," Dr. Reuben said. "There aren't a whole lot of standards for personal caregiving, and with an agency there is overhead, so you are getting less for your money."

Other staff who visit a person's home for medical reasons—such as nurses or nurses' aides who are paid via Medicare—sometimes help informally train the personal caregivers as well, noted Dr. Michl.

"Often I have found there are others coming in and providing hands-on instruction," Dr. Michl said. "I do think there is oversight so that people aren't falling through the cracks and being neglected."

Having a relative or friend as a personal care attendant isn't without problems, acknowledged Joyce Lemire, executive director of the Council on Aging for Southeastern Vermont. Her office recently had a case where a caregiver son wasn't doing all he could for a Medicaid client, but the client didn't want to admit it because she feared being thrown into a nursing home. Eventually, a caseworker helped her find another personal care attendant.

On the whole, said Dr. Reuben, family members actually do make the best caregivers because they are most invested in the job. Besides, abuse or neglect can happen in nursing facilities as well, he noted.

"Older people want more than anything to stay in their own homes," Dr. Reuben said. "Anything that provides another tool in the shed to enable this is generally a good idea."

Care for the caregiver

A less obvious issue that arises with the waiver program is the difficulty of care giving for the caregiver herself. Inexperienced and untrained family and friends may not realize how difficult it is to care for a loved one with complex conditions that require a lot of time and energy, and find themselves in over their heads, like the niece who tried to care for Dr. Michl's patient.

"It can be extraordinarily tiring to provide care in one's home to patients who have dementia and behavioral problems," said Samuel C. Durso, FACP, Chair of the Clinical Practice for the American Geriatrics Society and Clinical Director of Geriatric Medicine at Johns Hopkins University, who helped cared for his wife's ailing grandmother years ago. "I don't think every caregiver has the physical and mental stamina for that."

Support services are available to give caregivers a break under Choices for Care. Clients are eligible for up to 12 hours per day of adult day care, as well as 720 hours per year of "respite and/or companion care" that is separate from personal caregiver hours.

Respite and companion care mostly entails spending time with the person, and not helping as much with daily living tasks. Respite care can be provided by the same person who gives personal care, though the pay is less, said Ms. Woods. Many caregivers prefer to use respite care to give themselves a break, however, she said.

"Some people supplement personal care with respite care on a regular basis. Others save up those respite hours," Ms. Woods said. "So let's say your mother is living with you and you need to go somewhere for a few days. Your mother could save up her respite hours and choose to go to a residential care home or a nursing home while you're away."

The Medicaid waiver can also help those unofficial caregivers who aren't paid by Choices for Care, like a relative who lives with an elderly or disabled parent but works full-time, Ms. Woods said. An attendant might be hired to do a client's personal care in the morning while the relative gets ready for work. The client could go to adult day care while the relative is at work, and when the family returns from work and day care, the attendant returns for a couple of hours.

"So the relative can relax a while before he or she has to take over for the night. A lot of families just need a little help," Ms. Woods said.

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Room for improvement

The health care professionals who work with Choices for Care uniformly endorse it but concede that it is not without problems. One challenge Vermont faces is ensuring that its complementary programs, like adult day care and transportation, can keep up with the Medicaid waiver program, according to Joyce Lemire, executive director of the Council on Aging for Southeastern Vermont.

The number of Medicaid-supported hours of adult day services climbed from about 12,000 in July 2005 to 18,000 in June 2006, according to a Choices for Care quarterly data report. Already, some patients can't take advantage of adult day care due to limited hours at individual facilities, or because transportation to get there is lacking, said Susan Condon, a primary case manager with the Central Vermont Council on Aging.

"I feel we have a fragile system," said Ms. Lemire. "We've done it for a year and have adequate resources today, but the population is aging, and I don't know where the expansion of services is going to come from."

Ms. Condon said she thinks personal care attendants should be paid more, given that many are family members who live with a relative and are already being paid for only part of their time.

"$10 an hour is not a livable wage, especially if you don't get health insurance and you aren't eligible for state insurance programs," Ms. Condon said.

Ironically, the family's desired outcome—that the relative's health improves—can cause financial problems, noted clinical care coordinator Mary Woods, RN.

"Choices for Care isn't an employment program, which is what some people need in order to afford staying at home with mom," Ms. Woods said. "So if mom gets better and her allotment of personal care hours are lower, the child sometimes gets upset, because they are relying on that money to live."

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CMS offers 17 states demonstration awards

CMS awarded 17 states more than $23 million in grants for FY '07 and up to $900 million over five years for demonstration programs that will help build Medicaid long-term care programs to keep people in the community and out of institutions.

These grants help states shift Medicaid's traditional emphasis on institutional care to a system offering greater choices for individuals and a full range of home- and community-based services.

State FY 2007 Award Amount
Wisconsin $8,020,388
Oklahoma $3,526,428
Missouri $3,398,225
Ohio $2,079,488
Michigan $2,034,732
Connecticut $1,313,823
Maryland $1,000,000
Indiana $860,514
Iowa $307,933
New Hampshire $297,671
New England $202,500
New York $192,981
Texas $143,401
Arizona $139,519
Washington $108,500
California $90,000
South Carolina $34,789
Total $23,750,892

Source: CMS

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