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Rob and Stephanie Mauck

Rob Mauck, of Waukesha, who has autism, epilepsy and other conditions, testified at a public hearing Monday about planned changes to Medicaid programs for people with disabilities. With Rob, who used a special prompt method, is his mother Stephanie, who also testified.

Yael Kerzan, a disabled adult, enjoys her jobs at Wal-Mart and Northwoods Inc. of Wisconsin, a center for disabled workers in Portage.

“It makes me feel self-worth in the morning,” she said.

Her mother, Dallas Kerzan, is worried that changes to the state’s Family Care and IRIS programs could do away with local providers such as Northwoods.

“I am afraid that this could close my daughter’s facility-based work center,” she said.

The Kerzans, of Pardeeville, spoke at a public hearing in Madison on Monday about changes the state plans to make next year to Family Care and IRIS, Medicaid programs that provide home care, job support and other services to more than 55,000 disabled and elderly Wisconsin residents.

Currently, eight regional managed-care organizations, or MCOs, oversee the services for about 43,000 people through Family Care. Another 12,000 people use IRIS (Include, Respect, I Self-Direct) to choose their own caregivers.

People in both programs, which are designed to keep people out of nursing homes, get medical care through other Medicaid coverage.

Under the changes, outlined last week by the state Department of Health Services in a “concept paper,” the MCOs will be replaced by integrated health agencies, or IHAs. The agencies, expected to operate as insurance companies, will oversee supportive services and medical care, and offer an IRIS-like option.

Three IHAs will be in each of three regions. The department has not specified the regions.

The agencies will be paid set amounts for each person enrolled, which will “incentivize IHAs to provide high-quality, cost-effective care,” the health department said.

The department said the changes, called for in the state budget passed last year, will help slow the growth in cost of long-term care, expected to cost $3.4 billion this year.

Among the changes is a requirement that Dane County and seven other counties that haven’t adopted Family Care must do so.

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.

More than three dozen people spoke at the hearing at the Alliant Energy Center, one of two hearings held Monday. The other was in Eau Claire.

Many speakers said they are concerned that the self-direction option the IHAs must provide won’t allow as much independence and flexibility as IRIS.

Others said they’re worried that the IHAs, which could be for-profit companies from out of state, won’t contract with many of the local providers now serving many people in Family Care or IRIS. A requirement to do so expires after three years, according to the concept paper.

Providers of housing could be among those impacted, said Lincoln Burr, executive director of Rehabilitation for Wisconsin in Action.

“It puts small providers at risk,” Burr said. “It also makes a substantial risk for people (with disabilities) to have to move.”

Some speakers said the state should have five regions for the IHAs, not three. That would allow more of the MCOs to apply to become IHAs, they said.

“Three regions is very large in this state,” said Cindy Piotrowski, director of the Aging and Disability Resource Center of Portage County.

Stephanie Mauck’s 23-year-old son, Rob, has autism, epilepsy and difficulty speaking, and has learned to communicate through a special prompting method. He has learned that and other skills through IRIS, Mauck, from Waukesha, said, and she is concerned the IHAs will try to reduce such services by cutting costs.

“Individual budgets must be based on the participant’s assessed support needs,” she said.

Peg Olsen, of Madison, said her son, Eric, 53, has Down syndrome and lives in a Madison apartment with a roommate.

Olsen said she was upset to read the concept paper’s explanation for why changes are needed. The paper said Medicaid cost growth impacts other needs “including education, transportation and tax relief.”

“I couldn’t believe my eyes when I saw that,” she said. “Do we really want to fix Wisconsin’s perceived budget problems on the backs of people with disabilities?”

Bill Hanna, assistant deputy secretary for the Department of Health Services, said the concept paper will be refined before it is submitted by April 1 to the state Legislature’s Joint Finance Committee, which must approve the changes.

If the budget committee approves the plan, DHS will develop a waiver application to the federal government. That document will contain much more detail and will be available for public comment, Hanna said.

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