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An uncomfortable truth for anyone facing disability for a year or more: If you go into a nursing home, you might never get out.
Under patchwork Medicare provisions, says Utah Commission on Aging Director Maureen Henry, it is more convenient for hospitals to discharge patients to nursing homes than to figure out how they might live in their homes and communities.
But what looks like the easy solution can be costly. Nursing home bills may drive more people onto Medicaid, which costs taxpayers more, and the move can unnecessarily disrupt the community and impoverish the lives of patients, Henry says.
"You're shifting residence; you're shifting family structure out of the community and into the nursing facility," she says.
Now, with the help of a $700,000 grant from the federal Administration on Aging, the Utah commission is linking hospital discharge staff with "options planners," who help guide patients and their families through a complicated array of choices for extended care.
The way Medicare and Medicaid law works, people are guaranteed care in nursing homes. But there is no similar guarantee of coverage for care outside an institution, meaning family finances may limit the choices.
"People have the right to decide where and when they receive long-term care," Henry says. "Our objective is to try to catch people before they are scrambling in a crisis, stop giving people the runaround."
Through the maze • The grant, awarded in fall 2009, pays for four Aging and Disability "resource centers" staffers at aging agencies that serve 12, mostly rural, Utah counties.
Sunny Todhunter already was working as a nursing-home transition coordinator at the Center for Independent Living in Provo when she was designated an options counselor to residents of Utah, Wasatch, Sanpete and Juab counties.
"No one could be expected to navigate through [the system] without help," she says. "People need a live body to turn to."
Everyone, Todhunter adds, eventually will need a guide to long-term care, which is defined as a year or more. "We will have a family member who has a brain injury; we'll have an aging parent who needs care," she says.
On Sept. 12, a 77-year-old Logan resident, who out of privacy concerns asked to be called Jane for this story, lost her job. Two days later she had a stroke, followed by a two-week stay at University Hospital.
She was lucky.
With her thinking and speech unimpaired, she was able to ask to her son to contact the Bear River Association of Governments for help. In early October, the trail led to Deborah Crowther, the options counselor for Box Elder, Cache and Rich counties.
"She was like a friend, not a social worker," says Jane, who also has a heart condition, diabetes and degenerative osteoporosis.
Jane figured her only income was $500 in monthly Social Security payments. Crowther sat with her during a teleconference application for Supplemental Security Income, a federal disability program managed by Social Security.
During the interview, Jane learned that though she and her husband had divorced years ago, his death earlier in the year meant she was eligible for survivor benefits Social Security payments equivalent to his. The benefit bump meant she no longer needed the SSI, food stamps or Medicaid coverage Crowther had been helping her pursue.
Jane is living at home, as she had hoped, and has been applying for jobs because she wants the work and the income.
Crowther's assistance, she says, "has been a lifesaver."
Tough decisions • Another client, though disabled, had lived independently until he fell and needed hospital care. He faces a more complicated outlook, and Todhunter typed up a list of scenarios for his family.
If he stays at a nursing home, Todhunter says, he has to apply for Medicaid, because Medicare doesn't pay for nursing home care.
To get Medicaid, assistance for low-income patients, he would have to spend down his assets, including having a lien attached to his home, so that his assets wouldn't exceed $2,000.
After about three months at the nursing home on Medicaid, he could become eligible for a Community Care waiver. That would provide him support at home, such as a driver to take him to appointments or an assistant to help with daily activities, such as cooking.
His Social Security benefit and pension would put him over an income limit, so he would have to spend about a third of his monthly pay to buy into Medicaid.
And because the state budget pays for the waivers, there are a limited number available. The hassle might lead him to give up on Medicaid.
"Sometimes the stress of applying and becoming eligible is just too much for some people," Todhunter says.
Without Medicaid, he would have to leave the nursing home. If his doctor prescribed home care, Medicare would pay for an aide to help him bathe three times a week and a monthly nurse visit.
But Medicare pays for these services only if the recipient is home-bound. So the man who has been living independently would not be allowed to go to the store or visit friends.
Get ready • The counselors now focus on people in crisis, but Henry hopes to expand to early preparation, which she likens to women planning their pregnancies and births.
People need to envision the big picture of how they can take care of themselves as much as possible with health insurance, retirement savings, healthy behavior and learning about Medicare and Social Security, she says. But national surveys have shown people know little about the limits of the federal programs.
Advances in healthy longevity are seeing reversals because of the obesity epidemic, which promises more sick and disabled people needing care, Henry says. A 2007 Utah study based on census data predicted 130,000 Utahns will need long-term care by 2030.
"We're in a kind of crisis," Henry says. "If you project disability rates 20 years out, 30 years out, we can't support putting people in nursing homes." Long-term care options
The Utah Commission on Aging, part of the University of Utah's Center on Aging, is using a $700,000 federal grant to educate people who need long-term care after a hospital stay but not necessarily in nursing homes. "Options counselors" are now available in four locations:
Ability First / Central Utah
Center for Independent Living
Contact: Sunny Todhunter
Serves Utah, Wasatch, Sanpete and Juab counties
Active Re-Entry Center for Independent Living
Contact: Joey Allred
Serves Grand and San Juan counties
Bear River Association of Governments/Area Agency on Aging
Contact: Deborah Crowther
Serves Box Elder, Cache and Rich counties
Mountainland Area Agency on Aging
Contact: Lisa Miller
Serves Summit, Utah and Wasatch counties