Disability advocates rally against Family Care changes in budget

Disability advocates rally against Family Care changes in budget

Disability advocates rallied at the Capitol Tuesday against Gov. Scott Walker’s plan to change the state’s Family Care program.

Family Care provides daily-life help to the elderly and those with disabilities in most parts of the state. The proposal championed by the governor would change the administration of the program to be run statewide as an insurance benefit, rather than as it is currently, by eight regionally-managed care organizations. The budget would also eliminate the IRIS program, which allows participants to self-manage their care.

Advocates rallied in the Capitol Tuesday as part of Disability Action Day, asking for the state to keep its hands off of Family Care and IRIS.

“This is a program that isn’t broken, and we’re not sure why anybody wants to try to fix it,” said Lisa Pugh, with Disability Rights Wisconsin.

Stephanie Helle and her husband, Dan Helle, use Family Care every day. Stephanie was born with osteogenesis imperfecta and has a home health nurse assist her with daily routines for three hours every day. Her husband Dan has cerebral palsy and is legally blind, and he gets therapy work every week as well.

“We’re very proud of the level of independence that we’ve been able to achieve,” Dan Helle said.

The couple live together in their Whitewater home, and credit Family Care for keeping them independent.

They’re concerned about the governor’s proposed changes, saying that local case management is crucial.

“We wouldn’t have that local oversight, and that reduces the opportunity to participate more in having a say in our care,” Stephanie Helle said. “These things are what allow us to have independence and function on a daily basis.”

Pugh said disability organizations say they were shocked by the changes, and were upset that there are few details they can offer as to how the changes could affect participants’ daily lives.

“To have this level of change affect 50,000 vulnerable people is really a very difficult thing for people to understand,” Pugh said. “It’s hard for us as advocates that we don’t have answers that these people will be able to continue with the supports they have today.”

That’s the answer the Helles are looking for, saying their lives truly depend on it.

“We don’t want any more than we have right now, but we can’t do with less,” Dan Helle said.

“We want to remain here in this apartment living together as a married couple,” Stephanie Helle said. “That’s all we want.”

In a statement to News 3 Tuesday, a spokeswoman for the Department of Health Services said the reform plan is more “member-focused,” would expand the program to all state counties and would streamline state administrative operations.

“We believe that the current model is fragmented and would like to re-focus the program on improved total health outcomes, not just the long-term-care services,” DHS Communications Director Stephanie Smiley said.

The Joint Finance Committee is now considering the proposal as part of the full state budget, and will hold hearings around the state over the next two weeks, starting Wednesday in Brillion.