Health insurance covers treatment for the spinal cord disorder that has confined Amy Hunovice to a wheelchair. But Hunovice, who has no use of her legs and limited use of her arms, has to pay a home health care worker $13 an hour herself for help with simple daily tasks like bathing and dressing.
Hunovice, a 61-year-old former teacher who lives in Pikesville, is one of an estimated 10 million people who now need long-term care in this country, care that Medicare and health insurance in large measure do not cover. As Congress attempts to overhaul the health care system, the need for such care has prompted debate on a proposal that would establish a voluntary insurance program specifically for long-term care.
But those who have examined the proposal say it may not adequately deal with a problem most people don't even realize they could face. And passage is far from assured. The House health care reform bill unveiled by Democrats Thursday included the measure; the Senate has not decided on its final version, though a major bill from the Senate Finance Committee did not include the long-term care provision.
The problem is likely to get worse as baby boomers age and live longer than their parents. Government research shows that more than 70 percent of seniors will eventually need long-term care. That doesn't count disabled adults, who now account for about 40 percent of those needing care. Most are left depending on family and friends.
"This is a nightmare that won't end," said Hunovice, who has endured countless tests, surgeries and hospitalizations, only to be left without a successful treatment.
Her doctor did order home care. Hunovice's insurance provider is paying for nurse visits once a month but has ruled much of the daily care she needs is not medical and not covered.
For the care she is getting, she's now paying more because she doesn't have an employer to help defray insurance premiums. She's also four years shy of a full teacher pension and hoping her husband's small business does well enough through the bad economy to pay the mortgage. The house, however, is not wheelchair-friendly, and giving her a bit of independence by retrofitting the bathroom seems out of reach.
"I wanted to keep working, but I was an art teacher and that wasn't possible," she said. "I needed to work. And I loved it."
If she depletes her resources, Medicaid, the single safety net for long-term care, would kick in. But it mostly funds nursing home care, and Hunovice, like many others who need long-term care, wants to stay in her home as long as she can.
And that may be a less expensive option. The National Clearinghouse for Long-Term Care Information reports that the average cost for a year in nursing home in 2008 was $68,000 for a semi-private room. A home health aide three times a week cost $18,000 a year.
The clearinghouse reports that most seniors can expect to need three years of long-term care with two at home. About 80 percent of the home care will come from unpaid family and friends. More than a fifth of the adult U.S. population in 2004, or 44 million people, were caregivers.
The services people need vary widely, said Molly O'Malley, a senior policy analyst for the Kaiser Family Foundation, a heath information provider. Those with Alzheimer's disease may need help with medications or a ride to the doctor. Those with developmental disabilities may need meals.
She said the main solution proposed in health care reform legislation is called the Community Living Assistance Services and Support Act, or CLASS Act, first promoted years ago by Sen. Edward M. Kennedy, the Massachusetts Democrat who championed health care reform before he died in August. It would create a government-run fund that collects premiums from working people. After five years, it would pay a cash benefit of at least $50 a day. Premiums would likely be $100 to $120 a month.
"It's voluntary and promotes personal responsibility," said O'Malley. "It's by no means a fix to the long-term care issue. If enacted, it would expand long-term care options."
But some question such a fund's long-term viability. Dennis G. Smith, a senior fellow at the conservative Heritage Foundation, said the fund would become unsustainable if enough healthy people opted out of the program or too many people tapped the fund too soon - a real worry with a voluntary program that is not underwritten by an insurer with parameters to participate. Some studies show only 5 percent of those eligible would participate. Further, he said many people would find it objectionable that the U.S. secretary of Health and Human Services could raise the premium or lower the benefit without any oversight.
"This program allows Congress to allow future benefits but not really pay for them; it's a shell game," he said.