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When most Americans talk about fixing health care, according to polls they don't prioritize helping older Americans or younger people with disabling diseases or injuries.
But, as key lawmakers in Congress look at what's in and what's out of a national health reform plan, long-term care is gaining attention.
Massachusetts Sen. Ted Kennedy says he won't move a reform bill unless it includes a section on it.
At first glance, it looks like Terry Rickman is enjoying a cozy rainy afternoon on her living room couch — feet propped up under a fluffy pink blanket, one of her cats nestled in her lap.
But Terry is trapped here for hours on end every day. She was diagnosed with multiple sclerosis 23 years ago. At this point, Terry can't walk, can barely see and has limited use of her arms and hands.
"I'm really confused about what my day holds anymore," Terry Rickman says. "I try to prepare meals for Brian, that's one thing I have my PCA help me with."
Terry's PCA, or personal care attendant, comes for three hours a day, Monday through Friday, while her husband Brian is at work.
She helps Terry bathe, lifts her on and off the toilet, rolls her outside in a wheelchair to feel the sun and helps her keep house. But Terry is alone at least six hours because the Rickmans can't afford anything more.
"Too bad we can't train the cats," Rickman jokes.
The rest of the day, Terry does the best she can to live a fulfilling life from her couch in her mobile home in Marlborough, where she sits — often hungry, lonely, in dirty disposable underwear — until Brian comes home.
The Rickmans have spent tens of thousands of dollars on wheelchair lifts, automatic doors, physical therapy and home care.
"We have considered, because of the financial implications, possibly getting divorced," Brian Rickman says. "Terry would be able qualify for Medicaid, which would provide for as much care as she needed, if we were not married. We finally decided against it because of the emotional ramifications. But it was recommended to us by a few different people, actually."
The Rickmans' dilemma is familiar to many Americans who realize the only way they can afford a nursing home or assistance at home is to spend or transfer all of their assets so they meet the poverty qualifications for Medicaid.
Medicare, the healthcare program for seniors and the disabled, covers medical expenses, but not assistance for an 80-year-old recovering from a fall or an MS patient, like Terry, who needs physical therapy so her muscles do not atrophy.
Judy Feder is a senior fellow at the Center for American Progress, where she does research, writes and testifies about long term care as part of national health reform.
"These people don't distinguish between whether they need health care or these support services, Feder says. "They need them all."
Feder says 85 percent of long-term care is unpaid, provided by families and friends at home. She understands that many Americans think that's the way it should be.
"Families are giving their all, but it's not good enough," Feder says. "People are falling or going without food or care. And family caregivers need some help to be able to live their lives and not to have to sacrifice everything."
A plan Sen. Kennedy favors in a larger health reform bill would create a new long-term care fund. Working adults would see $30 a month deducted from their paychecks unless they opt out of the program.
After five years, they could begin drawing $50 to $100 a day, depending on their disability. That would cover some home-based care, but one day in a nursing home is $300 or more.
Howard Bedlin, with the National Council for Aging, says Kennedy?s plan resembles social security, which covers some, but not all retirement expenses.
"So," Bedlin says. "Similarly, you'd have a basic foundation of support from the government, on top of that, if you want protection from nursing home costs, for example, you would need to get private insurance, so it would build on this basic foundation that the government would provide."
Private insurers want tax credits or other incentives to make private long term care insurance more affordable.
They, like many other groups watching the health reform debate, are concerned about the cost of a new government run long-term care program.
Sen. Judd Gregg, the ranking Republican on the Budget Committee, says government needs to focus on reigning in the cost of two existing healthcare programs it can't afford.
"We're facing a massive problem here," Sen. Gregg says. "Because of the retirement of the baby boom generation, coupled with the explosion in the cost of health care, and the two combined create — well, it's about a $40 to $45 trillion — that's trillion with a T — unfunded liability in the Medicare and Medicaid accounts."
The 100-plus advocacy groups working with Kennedy say his plan would not increase government spending because people would pay into the fund in advance.
And they say both the states and the federal government stand to save money because fewer Americans would tap Medicaid for nursing home expenses
The Congressional Budget Office has not released a cost estimate for Kennedy's plan. Long-term care is on the agenda for other leading senators, but they favor more moderate changes to Medicaid or incentives to encourage Americans to prepare better on their own.
Any more substantial long-term care program may be a tough sell to the public.
Robert Blendon is a professor of health policy and political analysis at the Harvard School of Public Health.
"When you ask people what health care reform means, they don't mention long-term care services," Blendon says.
Blendon has been polling Americans on health care for 24 years.
"It isn't that people don't know that it's a problem," Blendon says. "It is that they feel they have more immediate problems and many of them are not in the age range that long-term care is the principle problem they face."
Blendon says long-term care is in the mix now because Congressional leaders may take money from Medicare to help fund a health reform bill and they need to offer senior citizens some additional protection in return.
But does trying to address long-term care now — especially if it make a health reform bill more expensive — make sense?
Brandeis University health care economist Stuart Altman has heard the concern.
"Putting long-term care on may be just the final straw that really does break the camel's back," Altman says.
On the other hand, Altman says many Americans don't realize that the cost of long-term care may be a greater threat to their financial security than not having health insurance.
"Much of what middle-class, middle-aged families use their health insurance for is not going to wipe a family out," Altman says. "Long-term care can wipe a family out, and it does."
It also strains and sometimes breaks the emotional bonds that hold families together. Terry and Brian Rickman have decided against divorce for now, but are seeing a counselor.
"I'm actually trying real hard to hold my marriage together, which is almost as hard as having a disease," Terry says.
"It's very hard to switch between essentially being a nurse and being a spouse," Brian adds. "Helping someone with everyday personal care on a regular basis really takes away a lot of the closeness."
The public may get a clearer sense of how long-term care fits in the national health reform debate next week when the Senate Finance Committee begins a series of round-table discussions on the framework for legislation.
This program aired on April 15, 2009.
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