By Gina Barton
March 11, 2001
Every night, Mette Schurbrock helps her husband, Steve, get ready for bed. Every night, she wakes up five times to help him turn over. Every morning, she hustles their two children off to school, then heads off to her full-time job as a nurse.
It's exhausting, even though she gets a little help. A home health-care worker comes for about two hours every morning to assist Schurbrock, whose multiple sclerosis has left him paralyzed from the waist down and with limited use of his hands. The worker helps him bathe, dress, shave, eat, brush his teeth and do exercises. Without that, his wife doesn't know what they would do.
She may soon be forced to find out.
In 1997, Congress passed a law that aimed to balance the federal budget by 2002 and keep Medicare intact until 2010. Funding cuts under the law spelled disaster for the home health care industry and its patients, especially permanently disabled people like Steve Schurbrock.
Since then, federal lawmakers have struggled to make amends. State initiatives have picked up some of the slack, yet more than 17,000 people in Indiana are on waiting lists for services. While advocacy groups are encouraged that increased funding is included in the proposed state budget for the next two years, they say it is still millions of dollars short of a solution.
Steve Schurbrock was diagnosed with multiple sclerosis in 1972. By 1982, he was confined to a wheelchair. By 1992, home health care workers began helping occasionally with Schurbrock's care.
That year, he met the three criterion required by Medicare for coverage of the services: he was homebound and could not leave the house without a "difficult and taxing" effort; he required some degree of skilled nursing care, physical therapy, occupational therapy or speech therapy; and his doctor confirmed that he needed the care.
In the years leading up to 1997, Medicare had gradually expanded its coverage for home health care, paying higher reimbursements to home health care agencies so they could help more and more people, said John Cardwell, chair of the Indiana Home Care Task Force. But the balanced budget act changed all that.
The act "killed home health care," said Jean Macdonald, director of public policy with the Indiana Association for Home Care. The act placed reimbursement caps on agencies across the nation. Instead of paying caregivers by the visit, Medicare began paying a flat rate. Whether the patient received care once or 60 times during a two-month period, the reimbursement rate was the same.
"The rates were so drastically cut that you could not provide care for that amount," she said.
As Macdonald tells it, all the agencies began to lose money. About 160 of them -- half the agencies in the state -- closed between 1998 and 2000, Macdonald said. Nationwide, 2,500 agencies closed. The remaining businesses were left to deal with the federal Health Care Financing Administration, which oversees Medicare. All of a sudden, there was no room for error when it came to determining patients' eligibility.
Thomas Hoyer, director of HCFA's chronic care policy group, disputes that interpretation. A court decision in the mid-1980s made it difficult for the Medicare program to deny payment for a home health care visit, he said. Consequently, agencies began to provide more care than they had in the past and to bill Medicare for services that should not have been covered.
An investigation by the federal Office of Inspector General determined that 40 percent of home health care visits in the '80s and early '90s should not have been paid for by Medicare.
The purpose of the Balanced Budget Act was not to reduce services, but to bring them back to the levels specified within the law, Hoyer said. The 60-day rates are based on average cost of care for certain conditions. Sometimes, the payment is more than the actual cost; sometimes it is less. And exceptions can be made in extreme cases. The reimbursement caps since have been lifted.
"We deny very few claims," Hoyer said. "We have never denied enough claims to frighten anybody into doing anything."
While the cause is in dispute, the result is clear: Agencies across the nation began to interpret the eligibility criteria more strictly.
"Millions of people had their care dramatically curtailed or terminated, thousands in Indiana," Cardwell said.
Left without help from the federal program, these patients had to seek it from two state programs: Medicaid waivers and CHOICE. Medicaid waivers can assist disabled people with such services as doctor visits, hospital care, prescription drugs, therapy and modifications to their homes. But unlike traditional Medicaid, which provides insurance coverage for all people in poverty, funding for the waivers is limited.
CHOICE is a state program that provides financial help to people who cannot perform two activities of daily living -- such as bathing, dressing, getting out of bed or eating -- on their own. Assistance is provided on a sliding scale, depending on income.
A major drawback to both programs is that the demand far exceeds the funding. About 9,300 people are on the waiting list for a Medicaid waiver, and 8,100 are on the waiting list for CHOICE. The wait can be months or years long, said Melissa Durr, executive director of the Indiana Association of Area Agencies on Aging, which administers the programs. The two most common ways to get off the lists are to die or to enter a nursing home. Nursing home care is automatically paid by Medicaid once a family has exhausted its financial resources.
Last year, the state budget allocated $42 million for CHOICE. House Bill 1001, the chamber's budget bill passed last month, included a $6 million increase each year for the next two years, for a total increase of $12 million. Durr estimated the increase will allow about 1,600 people a year to move off the waiting list.
At the federal level, Congress has gradually reinstated some of the cuts it made to health care funding in 1997. U.S. Sen. Richard Lugar, R-Ind., has co-sponsored several bills to restore funding.
"Home health care is vitally important to many Hoosiers, not only because it saves money in many cases but because of the personal benefits many patients receive while being cared for in their own homes," Lugar said in a statement. "Our health care system should encourage services to be performed . . . in the home instead of nursing facilities."
In the meantime, Schurbrock and his wife have hired Indianapolis lawyer Scott Severns to help them appeal the decision to revoke his Medicare coverage. But there's a catch to the appeals process, which can take months or even years. Home health-care agencies are not required to keep providing services while an appeal is pending, and if no services currently are being provided, the patient loses his or her right to appeal. Patients who lose an appeal can expect to be billed for the services.
Hoyer, the federal official, says his agency has waged a public information campaign during the past year to make patients aware of their appeal rights. Officials try to review the claims quickly so that patients know as soon as possible whether they will have to pay out-of-pocket.
A federal administrative law judge makes the final decision.
"People with multiple sclerosis have really been hurt by this," said Judy Stein, director of the Connecticut-based Center on Medicare Advocacy, which helps low-income people with the appeals.
Low-income families are especially vulnerable during the appeals process because they can't pay for the care if they lose. Some people end up confined to their beds because they can't get coverage for help both in the morning and at night.
"Some patients develop bedsores and end up in the hospital," she said.
After negotiating with Severns, Clarian Home Health agreed to keep helping Schurbrock until June 1. If the judge decides he is not eligible, the Schurbrock family will be left with few options.
Leaving his wife and children for a nursing home is one of Steve Schurbrock's biggest fears.
"The MS isn't the hard thing. It's all the bureaucracy and the system I'm fighting," he said.
His wife added: "We
want to stay here as a family. That's what we're fighting for."
Contact Gina Barton at (317) 444-6068