Through Wisconsin’s Medicaid program, Nick Zouski, a disabled man from Madison, hires a caregiver to come to his home at 5:30 a.m. weekdays to help him get ready for work.

Under changes in the state budget passed in July, insurance companies will administer such long-term care, along with medical care, for some 55,000 disabled and elderly residents.

Zouski, 37, a quadriplegic from a diving accident who works at Access to Independence in Madison, is worried about the impact on his life.

“I would challenge anyone to find a large insurance company that would send someone consistently to my house at 5:30 in the morning,” he said. “It’s not going to happen.”

Zouski was among more than 30 patients, advocates and others who testified Wednesday at a public hearing in Madison on the changes, set to begin in 2017.

The Department of Health Services is expected to release details early next year.

Currently, eight regional managed-care organizations oversee home care and other supportive services for about 43,000 disabled and elderly people through the state’s Family Care program, part of Medicaid.

Some 12,000 more rely on an alternative program called IRIS — Include, Respect, I Self-Direct — which lets them hire caregivers.

Both programs are designed to keep people out of nursing homes.

Under the changes, which the health department calls Family Care/IRIS 2.0, a smaller number of insurance companies known as integrated health agencies, or IHAs, will replace the managed-care organizations and offer an IRIS-like option.

Additionally, the companies would provide participants with medical care, something they now receive through other Medicaid coverage.

As part of the change, Dane County and seven other counties in Wisconsin that haven’t adopted Family Care will have to implement it.

Dane County has contributed extra money, which brings in federal matching money, to provide supportive services that county officials say are richer than those in Family Care. There is a waiting list, however, which is supposed to go away under Family Care.

The scope and complexity of the statewide changes has left patients and advocates concerned, many of them told health department officials at the hearing at Goodman Community Center on Madison’s East Side.

Susan Oshman, of Madison, said her daughter, Meadow Cynkar, 40, has cerebral palsy, seizures and developmental disabilities. Oshman said Cynkar has been able to work three part-time jobs, pay taxes and live with others in a Madison apartment because of consistent care under the current system.

“Changing providers to the new IHA could have devastating effects,” Oshman said.

Tom Frazier, co-chairman of the Wisconsin Long-term Care Coalition, said Aging and Disability Resource Centers, established around the state as part of Family Care, should be maintained and not replaced by other entities, as has been discussed. The centers help people find services.

With the changes, “we’re going to need all the help we can get,” Frazier said. “There will be a lot of confusion and destruction of people’s previous lives.”

Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities, said state officials should make the IHAs accountable for the lifestyle quality of clients, not only medical factors such as hospitalizations.

“Questions like: How much are they being employed in the community?” Swedeen said. “Are their choices being honored? Do they feel safe?”

Fran Gentry, adult services manager for Dane County, urged state officials to make sure the IHAs don’t jeopardize supportive services by focusing more on medical care. Also, the insurance companies shouldn’t be allowed to have unlimited profits, Gentry said.

“If profits are not capped, profits will increase with every service denial, and that would be bad,” he said.

Karen Musser, president and CEO of Madison-based Care Wisconsin, one of the managed-care organizations that operate Family Care today, said the agency hopes to participate as an IHA in the new program.

But Musser asked state officials to lower financial reserve requirements. Critics have said most of the managed-care organizations don’t have enough money to qualify.

Margaret Kristan, of the health department’s long-term care division, told the audience that Wisconsin is a national leader in managed and self-directed long-term care. “We want that tradition to continue,” she said.

The hearing was the fourth held around the state this month. Three more hearings for the general public are scheduled, including another one at Goodman Community Center at 5:30 p.m. Oct. 7.


David Wahlberg is the health and medicine reporter for the Wisconsin State Journal.