Banishing the disabled - Wisconsin caps home-care reimbursement

Progressive, The, March, 1996 by Ruth Conniff

On New Year's Day, hundreds of disabled people in Wisconsin suddenly confronted the prospect of entering nursing homes. The state budget, passed last fall, placed a cap on funding for community-based services, including personal-attendant care. On January 1, the state began enforcing the cap. Anyone whose home care costs more than the cap was directed to the nearest residential-care facility. This has caused a wave of fear and outrage among the disabled.

"I was in a nursing home once, and believe me, I don't ever want to be in one again," says Steve Verridan, who suffered a spinal-cord injury in a diving accident. He now works at Access to Independence, a nonprofit agency in Madison, Wisconsin, helping other disabled people find home care. When the new law went into effect, Verridan--like many of his clients--had to call ten nursing homes within a fifty-mile radius of his home in order to prove they wouldn't take him. Unless his phone calls earn him an exemption, he could find himself back in an institution. "Of course you're calling these places hoping like hell to be turned down," he says.

What's happening in Wisconsin marks a dramatic shift in the way the federal and state governments treat medicaid, the program that provides health care to millions of poor, elderly, and disabled Americans. Republicans in Congress have proposed cutting federal Medicaid funds by as much as 30 percent over the next seven years. And politicians of both parties--from President Clinton to Wisconsin Governor Tommy Thompson, who is the head of the National Governors' Association--are advocating giving the states more flexibility to try cost-saving experiments.

"Taxpayers can no longer afford open-ended Medicaid entitlements," a memo from Wisconsin's Department of Health and Social Services explains. "For the first time in recent history, Medicaid recipients must make the same choices about care setting as private-pay individuals."

Thus, people with disabilities in Wisconsin have become the most reluctant of shoppers, making their phone calls to nursing homes, and praying for rejection.

"We've gotten several calls ... I've mostly talked to people in their twenties or thirties who are going to school and have jobs," says Maureen Griffin, the admissions coordinator for City View nursing home in Madison. "It's hard. I'd hate to see anyone go somewhere they don't want to be, and it seems like most of them don't want to be here. They're just looking for a `no' answer."

Unfortunately, she says, she can't always tell her nervous callers what they want to hear.

"In some scenarios, we'd be able to meet their needs. Most often I've been saying yes, and then they try to get off the phone in a hurry.... There's been a couple of people I've been able to say no to because they needed transportation provided, or they had space needs, they had a pet, something like that."

According to the state, sympathetic nursing-home staff have been handing out excuses too readily.

"The state has sent out notices saying these reasons aren't good enough," says Ray Froemming of the Wisconsin Coalition for Advocacy, which is filing a lawsuit against the home-care cap. "But there was never any explanation of how people should know if what the nursing homes say is accurate. Obviously, they needed to think this through more carefully before. They're learning as they go."

Under the new law, 278 people in Wisconsin are affected by the cap on the state's Community Options Program, which was created to fund community-based alternatives to nursing-home care. Another 500 to 600 people are affected by the cap on Medicaid reimbursements for home health care, the state estimates.

All of these people have home health-care expenses that exceed $2,325 per month--the average Medicaid portion of nursing-home care. The caps don't include people under twenty-two years of age or the ventilator-dependent, who are automatically exempt. People for whom no nursing-home bed is available are also exempt--if they can demonstrate that the ten nursing homes nearest them won't let them in.

As the disabled scramble for exemptions, confusion and hard feelings abound.

"We've done what we can to comply," says Martha Desjardin of Sun Prairie, Wisconsin, whose thirty-six-year-old daughter, Terri, has a progressive neuromuscular disorder. Terri can't speak or get around the house without assistance. Martha, who is sixty-two and has arthritis, and her husband, who is sixty-five and has a bad back, rely on attendants to help Terri bathe and dress and get in and out of bed.

To bring Terri into compliance with the cap, the state cut back the Desjardins' attendant care to six-and-a-half hours a day. "It's just very difficult for us to handle her all by ourselves," Martha says.

Like Verridan, the Desjardins phoned ten nursing homes to try to get an exemption from the cap. "We got no's from ten places. Her skill level was too high for them to take care of her. Terri's needs are more skilled than what's available in a nursing home."