Sept. 16--Carrie Ring needs a caregiver with her at all times to ensure her safety.

At 32, Carrie has developmental disabilities that prevent her from speaking or even walking without assistance. Her father, Ralph Ring of Eau Claire, estimates that Carrie has the mental development of a typical 1-year-old.

Ralph also calls his daughter, who is diagnosed with a seizure disorder and cerebral palsy, a joy to be around.

"She just smiles and lights up the room," he said. "She makes friends wherever she goes."

Things haven't always been so rosy for Carrie since she moved out of her parents' house after 28 years, when they decided they were getting too old to provide the around-the-clock care their daughter needs.

The family tried several other group homes but were dissatisfied by caregivers who they felt put Carrie's safety at risk or left her sitting trancelike in a chair for hours on end.

Ralph gives much of the credit for Carrie's recent good spirits to the caring, professional staff at Your Home, an adult family home near Tilden where Carrie has lived -- and thrived -- since May 2011.

But that ideal living arrangement is threatened by a nearly 40 percent cut -- from $305 to $190 a day -- in the reimbursement Your Home receives from the managed care organization Northern Bridges, or MCO, that oversees Carrie's care through the state's Family Care program.

Your Home owner Dennis Sykora was put in the uncomfortable position of having to notify the Rings he no longer can afford to care for Carrie at the new rate.

"I didn't want to lose her as a client, but I'm not going to lose money doing this job," Sykora said, noting that the reimbursement rate is going down at the time costs for fuel, food and insurance are going up. "When they do these cuts, the bottom line is it hurts the residents, and that's really sad."

Court challenge

Similar concerns across the state have sparked a class-action lawsuit filed recently on behalf of Carrie and 16 other Family Care clients.

Several of the plaintiffs are from northwestern Wisconsin, where the lawsuit alleges regional MCOs Eau Claire-based Community Health Partnership and Hayward-based Northern Bridges have made such drastic cuts in reimbursement rates that providers are being forced to notify numerous residents they will be discharged from the homes where they live.

The lawsuit, which names the state Department of Health Services and three MCOs among the defendants, alleges the rate cuts have violated the Americans with Disabilities Act by targeting residents with developmental disabilities.

DHS contracts with MCOs to provide long-term care for low-income adults who have physical or developmental disabilities or are frail and elderly through its Family Care program. The program served 28,885 people in 53 counties as of June 2010 and had an annual budget of $936.4 million.

If a federal court certifies the lawsuit as a class-action, Milwaukee attorney Robert "Rock" Theine Pledl estimated he could end up with 4,000 plaintiffs. A similar lawsuit in 2004 focused on southeastern Wisconsin clients prompted the state to increase reimbursement rates enough that none of the plaintiffs was forced to move, Pledl said.

"The goal of the lawsuit is to stop these forced moves and let people decide where they want to live, and also to get the state to come up with a long-term funding solution so there aren't these surprises in the future," Pledl said.

DHS deputy secretary Kitty Rhoades and CHP spokesman Dean Mathwig said they couldn't comment about an ongoing lawsuit.

Painful decisions

Aurora Community Services, a Menomonie-based company that operates group homes serving about 350 people throughout west-central Wisconsin, is one of the many providers who have been forced to issue discharge notices to clients because of the rate cuts -- sometimes as high as 70 percent.

"The providers have really been put between a rock and a hard place," said Holly Hakes, Aurora's executive director. "You either take the reduced rate and cut corners wherever you can while still trying to provide adequate care, or give a discharge notice and break somebody's heart and make a whole bunch of people mad at you."

Unfortunately, she said, the decision in dozens of cases this year has been to issue the discharge notices, as the only way to guarantee quality care in a business in which 80 percent of the income goes to caregivers.

"It absolutely breaks my heart to see the emotional impact this is having, both on the people with the disabilities and their families," Hakes said. "People are frightened, they're hysterical, some are in tears, and we're not able to fix it. ... We've been in business for 26 years, and this is unlike anything we've ever experienced."

State Sen. Kathleen Vinehout, D-Alma, and state Rep. Kathy Bernier, R-Lake Hallie, have heard multiple complaints about Family Care funding and promised to monitor the situation.

Vinehout suggested CHP, which announced Tuesday it was closing at the end of the year after DHS said it would be replaced as the regional MCO operating Family Care programs as of Jan. 1, may be a casualty of a larger state funding issue highlighted in a 2011 state audit of Family Care.

The review by the Legislative Audit Bureau showed that several of the MCOs were losing money -- with CHP in the most precarious financial situation of them all -- and noted that the organizations maintained state reimbursement rates weren't sufficient to pay for necessary services, Vinehout said.

High needs

Paul Cook, CHP's former CEO who resigned Aug. 20, told the Leader-Telegram in 2010 that Family Care was underfunded from the beginning, and the financial squeeze was particularly acute in the Chippewa Valley, where a disproportionate number of individuals with severe developmental disabilities settled after the state launched a major downsizing of Northern Wisconsin Center for the Developmentally Disabled in Chippewa Falls in 2003.

Pledl said the high percentage of Family Care clients with developmental disabilities in the region should be a point of pride.

"It shows northwestern Wisconsin counties were progressive in moving people with significant needs into the community," Pledl said. "They're not at home in the basement or sitting in institutions; they're receiving services."

But those services come with a cost, and DHS never adequately accounted for the intensity of needs among west-central Wisconsin's high-cost patients in setting reimbursement rates for services that sometimes include 24-hour care.

Rhoades, however, said all the state's Family Care MCOs have difficult clients, and reimbursement adjustments are made for acuity. She expressed optimism the state would find one or more MCOs to replace CHP that would be able to serve residents with the funding available.

"This is a great opportunity for us to implement as many best practices in Family Care as possible in that area," she said.

Balance sought

The department's goal, DHS spokeswoman Stephanie Smiley said, is to ensure consumers are receiving the right amount of care at the right time in the appropriate setting.

Finding that balance is a challenge, Bernier said, especially when some providers may have been paid more than necessary at times in the past.

"It's always difficult to give something and then take it away, and that's exactly what's happening right now," Bernier said. "The argument, however, is that we're taking away more than what's responsible, and we have to make sure that doesn't happen. I want to make sure that our most vulnerable citizens are not neglected in any way."

Smiley maintained Family Care, if its cost-effectiveness and fiscal condition can be further improved, offers the potential to meet the future long-term care needs of residents in Wisconsin, where the 65-and-older population is expected to double by 2035.

"It is essential that we make our long-term care programs as cost-effective as possible to meet this growing demand in the coming years," Smiley said.

When Family Care expanded nearly statewide late last decade, perhaps the biggest selling point was that the program would eliminate huge waiting lists for state residents needing long-term care services. The theory was that the dramatic step would be possible because the MCOs taking over the program from county human services agencies would cut costs enough that the savings would pay for the new people receiving care.

But almost from the start MCOs found they were forced to cut services for clients in an attempt to stay within their budgets.

The sad result, Vinehout said, is the rash of discharge notices that have disrupted so many lives and led to the lawsuit, as MCOs scramble to make ends meet despite a scarcity of state funding.

"Now we've kind of come to a crisis, and Eau Claire is ground zero for that crisis, and the clients and their guardians are going to see the effect of that crisis when they lose that placement," Vinehout said.

The lawsuit has the potential to bring much-needed attention to a longtime problem, she added.

And for families such as the Rings, the lawsuit also seems like their best hope to avoid having to move their daughter out of a group home where the staff understands her needs and knows how to take care of her.

"We just hope they'll continue to keep the same rates so Carrie can stay in this same home that she's done so well in for the last 15 months," Ralph said. "We just want what's best for our daughter."

Lindquist can be reached at 715-833-9209, 800-236-7077 or eric.lindquist@ecpc.com.

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(c)2012 the Leader-Telegram (Eau Claire, Wis.)

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