BROKEN PROMISES

LAST SEPTEMBER, Gov. Scott Walker was honored with a national award recognizing Wisconsin as a leader in long-term care at the Aging and Disability Network Conference, held at the Marriott Hotel in Middleton.

The award presenter praised Walker's "commitment to expanding innovative programs" that allow people "to live more independently."

Walker had wanted to overhaul Family Care, Wisconsin's long-term care program, since he was elected governor in 2010. Launched in the late 1990s, Family Care began as an alternative for counties that no longer wanted to provide support locally through Medicaid legacy waivers.

It had taken eight years, but in less than six months Family Care would roll out in six of the seven counties yet to make the transition.

Accepting the award, Walker extolled the virtues of the state's long-term care takeover.

"By expanding Family Care... statewide," he said, according to a press release put out by his office, "we will eliminate waitlists and provide critical community services to those who need home care, transportation, and employment support, enabling them to live and work independently in the community."

On Feb. 1, the first wave of more thar. 2,100 Dane County residents transitioned into Family Care, with May r being the deadline for all adults to make the transition. Many, however, have described the new system as more of a bureaucratic black hole than the streamlined model 0: efficient care they were promised.

"1 don't know why they had to fix something that wasn't broken to begin with," says Terri McCormick, who provides around-the-clock care for two elderly women born with cognitive impairments.

Others are less critical.

"I think that people are waiting to see whether some of the best practices in Dane County for years are indeed going to carry over," says Lisa Pugh, director of disabled rights group The ARC-Wisconsin, and an early critic of the plan.

Pugh's daughter, born with cerebral palsy, recently turned 18. Were it not for Family Care, she would have spent years on the county's waitlist for the full-range of adult services. (Children's care continues to be provided by the county.)

Nevertheless, Pugh understands many people's fears. "Dane County, nationally, has always been looked to as a leader in how it supports people and so there is a lot on the line."

In July 2014, Dane County Health and Human Services director Lynn Green told a group of county board members that the county's goal was to work with the state "so that [Family Care has] a smooth transition and [is] not a shock to our consumers."

"The state wants us to succeed and will work with the county," Green said, according to official notes of her presentation.

Multiple sources say that didn't happen.

"The state was absolutely uninterested in problem solving," says a former lobbyist familiar with discussions between state and county officials. "They kept telling us they wanted the transition to be as smooth as possible, but then totally refused to play along."

Families were told they had nothing to fear, but Lynn Breedlove, co-chair of the Wisconsin Long-Term Care Coalition, says the state "overpromised."

"It's hard to predict in advance what's going to be in these plans," he says. "Last fall, they said it's not anything to worry about, but that promise isn't really coming true for everybody. For some people, this is going to be a pretty big deal."

DANE COUNTY EXCELLED AT CARE

Terri McCormick's clients are 72 and 65 years old, and have lived with her for 25 and 15 years, respectively. The oldest suffers from dementia. Both are incontinent, so McCormick begins each day changing diapers and washing their bedding.

In addition to doing 20 loads of laundry each week, McCormick serves 63 meals and can log over 100 miles shuttling "the ladies" around.

This isn't the first time in McCormick's 45-year career she's had to adapt to a new regulatory landscape, but no change has frustrated her more than Family Care.

"With the county, I had one person I dealt with for each of the ladies I care for," she says. "Now I'm dealing with four or five people depending on the issue, but none of them have an answer for anything."

Historically, long-term care meant institutionalizing the frail elderly and developmentally disabled, isolating them from the community. In the early 1980s, the federal government introduced legacy waivers so states could develop community-based programs using Medicaid. Funds that otherwise would have gone to institutional care were dispersed among Wisconsin's 72 counties, which hired local providers for services like paratransit and job coaching.

Not all counties were good at this; some didn't want the respcnsibility. But Dane County excelled. Over time, its partnerships with public and private entities nurtured a culture of care that encouraged clients to be free and self-governing.

Providers were held to a higher a standard.

"The county would inspect your house," McCormick says. "If you didn't have something the way it's supposed to be you had to fix it. Case managers visited every three months. Another came every s:x months to ensure there was no fraud going on. Now, I don't know if we have any ofthat or not."

Each year, Dane County spent upwards of $20 million in tax revenue to supplement its Medicaid allocation. By its own analysis, it spent $1,800 more per participant than Family Care.

The downside was that higher costs meant serving fewer people, resulting in long waitlists.

But for McCormick, Family Care has meant only more problems and hassles. In March, after her sister passed away, it took four days before she was provided a fax number for her respite request. When no one followed up, she called several times until reaching the care manager.

"She said, 'I'm going into a meeting right now and I'll get back to you,"' McCormick says. "That was yesterday about 11 o'clock in the morning. It's now Wednesday, 2:30 in the afternoon."

WAITLISTS SPUR NEW SYSTEM

In 1995, Gov. Tommy Thompson convened a committee to develop a plan that would eliminate waitlists and cut costs, yet remain flexible enough to accommodate demand when baby boomers began to retire. Family Care was introduced four years later.

The plan was spurred by a lawsuit against Milwaukee County over long waitlists. The U.S. Supreme Court's Olmstead decision in 1999 also gave eligible residents the right to home-based and community-based care under the Americans With Disabilities Act.

Under the plan, state-established managed-care organizations would parse out care similar to how HMOs do with medical benefits. In 2007, after being successfully piloted in five counties, Gov. Jim Doyle signed a bill authorizing Family Care's statewide expansion. Aging and Disability Resource Centers were also established as the point-of-entry in each county.

By June 2010, more than 50 counties had scrapped their homegrown systems for Family Care and a Medicaid-mandated fee-for-service alternative known as IRIS (Include, Respect, I Self-Direct), which primarily served people with disabilities, allowing them to have more control over the care they received. However, Family Care's rapid expansion and low-capitation rates raised doubts-about whether the managed-care model was feasible. When Walker took office, three of Wisconsin's nine MCOs, organized as districts, verged on bankruptcy. Enrollment was capped pending an evaluation by the Legislative Audit Bureau.

Walker's 2015-17 budget set the stage for reform. In early 2016, he unveiled Family Care/IRIS 2.0.

"No matter where someone lives in the state, they will have access to the supports necessary to continue living in the community," Walker said.

Philosophically, Family Care/IRIS 2.0 was faithful to Thompson's vision in name only. Under the 2.0 plan, "integrated health agencies" - functionally HMOs - would replace managed-care organizations and IRIS would be replaced with "an IRIS-like option."

In late March 2016, Family Care/IRIS 2.0 was unveiled and sparked an immediate backlash. The only clear winners were Walker and out-of-state insurance companies. Even Republican lawmakers who supported reform disliked the idea of disenrolling more than 60,000 people from their current supports for what Kitty Rhoades, secretary of the Department of Health Services, characterized as "an experiment."

Sen. Alberta Darling, Republican Joint Finance Committee co-chair, asked how Health Services could ensure a seamless transition. In response, Rhoades laid out the department's transition training, education and outreach strategy.

"The Department has multiple years of experience in transitioning current long-term care members to Family Care," wrote Rhoades, who died in 2016.

The plan, however, was pulled two months later.

"It was clear what they wanted to do was bring in big insurance coinpanies," says the source familiar with talks. "They were a little too transparent with it and had to find a new surreptitious way to go about it. But the big insurance companies still have their tentacles in this."

VAGUE ANSWERS. FIRM DEADLINE

Late last summer, advocates and family members of people with disabilities were still waiting for answers to questions they had about Dane County's transition.

Health Services held a series of forums in August and September to address concerns from participants aņd providers, who were assured nobody was going to lose service.

"People relied on that, they believed it, and now they're getting their individual plans and they're being told, 'No,'" says Breedlove.

Dane County's Aging and Disability Resource Center manager Jennifer Fischer declined to comment to Isthmus, but notes from the center's governing board meetings throughout last year track her growing concerns about overall readiness. As of October, the state still had not fulfilled her multiple requests for guidance.

The informational forums likewise failed to assuage doubts. According to notes from the board's Oct. 19 meeting, members believed the state was being less than forthright.

The state also imposed a three-month transition deadline rather than the customary six months, despite Dane County having the second largest transition, behind Milwaukee County.

"They wanted us to start it on Jan. 1," says Kim Turner, executive director of Options in Community Living. "They eventually agreed to Feb. 1, but that's the only accommodation they made."

On Sept. 18, a state benefits administrator wrote to one advocate that specifics for Dane County's transition were still being hashed out, contradicting what colleagues said at the forums.

Even after Family Care arrived on Feb. 1, the cycle of secrecy and revelation continued. Enrollees haven't been allowed to meet with managed-care organizations or IRIS consulting agencies prior to choosing which one to work with.

"If I was choosing an insurance company, I'd go out and ask questions," says Theresa Ellis, whose son, Daniel, is now enrolled in IRIS. He spent years on the Dane County waitlist for adult services after transitioning out of services offered to children. "Same thing with the IRIS providers, [but] we just had to pick one."

IRIS enrollees additionally must choose a fiscal agent. None were local to Wisconsin, Ellis says.

The paratransit vendor she chose for Daniel didn't know new paperwork was required of them, so she provided it for them.

"I don't think the state did any education on their end," Ellis says.

SERVICE REQUESTER. BUT DENIED

After enrolling in IRIS on March 1, Ann Marie Siedschlag spilled hot tea in her lap, sustaining serious burns. She requested a wellness inclusion (WIN) nurse through a county program that provides specialized care to roughly 200 clients annually.

Siedschlag, 58, once could reasonably expect a nurse to visit within 24 hours. Now she needs a doctor's referral, which requires an appointment, transportation arrangements, and help transferring in and out of her wheelchair. Even with a doctor's referral, requests can still be denied.

Unlike personal care nurses, who ensure care has been provided, WIN nurses focus on overall well-being. They provide care wherever the client is and are specially trained to work with thoşe who don't speak or whose behaviors complicate doctors visits. They also attend doctor appointments with clients.

But now that IRIS is replacing the county's program, some people are going to doctors for the first time without a WIN nurse, says Breedlove. "So they're not understanding what to do when they go home. Those who have complex medical issues could be in real danger."

Support brokers also face an uncertain fate.

The backbone of Dane County's system, support brokers provide casemanagement services in addition to other needs that arise.

"I know brokers who have stepped in in emergency situations and provided home care for their clients," says Ellis. "There have been times this last month when I've wanted to call my son's old broker."

Department of Health Services communications director Julie Lund says, via email, that, "While some people may see their services are slightly different, there will be no cut in services."

Lund, however, wouldn't say how many requests or denials for support brokers and WIN nurse services there have ' been since Feb. 1.

"As we are still in transition and individual plans are still being finalized, it is too soon to provide the data you are looking for," she writes.

Support brokers are available only to IRIS enrollees, but there's a caveat: "Support broker service cannot duplicate another service - such as case management service," Lund says.

Siedschlag's WIN nurse request was denied.

"They said the Medicaid nurse can do what she does, but they can't," she says.

Dane County funded WIN nurses through December 2018 and later granted Siedschlag's request. A doctor had treated her burns, but the WIN nurse could have done so sooner and at less cost. It was the WIN nurse who eventually showed Siedschlag's support team how to care for her wound.

"That's something that didn't happen in the emergency room," says Turner.

TEMPERED EXPECTATIONS. ANEWNORMAi

The Family Care transition has reverberated, causing far-reaching upheaval. Las: fall Madison Metro announced it was ending paratransit service because Family Care's expansion meant the county would no longer be contributing $3.9 million annually.

"We are doing what we can," Mayor Paul Soglin said on Oct. 3 in regard to paratransit service, when .ntroducing his 2017 budget. "Tools are limited and our time is short."

Betty Merten, who uses a wheelchair but doesn't rely on long-tetm care services, suspects Soglin knew about the shortfall much earlier than his comments suggest, but delayed making an official announcement until it was too late to do anything. Soglin's office declined to comment.

Similarly, other clients and advocates say the county did not put up much of a fight to stay independent from Family Care.

"Keep in mind," says the former lobbyist, "part of why Family Care took off is because counties got to get rid of these services, save all of this money, and they didn't have to deal with it anymore."

Ellis believed that county officials were as shocked as anybody when Family Care/I RIS 2.0 was unveiled, so she was surprised to learn Lynn Green had approached state officials two years before then to discuss the transition.

"There have been a lot of communication issues," Ellis says.

Green couldn't recall that specific meeting, but Breedlove says that while decision makers knew the transition would happen one day, they weren't formally informed by the state until much later.

"There certainly is an argument you could make that families deserved enough advance warning as possible," says Breedlove. "The other view is that it wasn't a done deal so let's not alarm families."

The former lobbyist says there weren't any satisfying options.

"What are they supposed to say? 'Family Care is going to screw ynu?"' the lobbyist says. "Providers didn't want to scare families by telling them the sky is falling."

HIGH EXPECTATIONS, LOW STANDARDS

The state oversaw 70 transitions ahead of Dane County, so why didn't that experience pay off for local residents?

Some blame mean-spirited state bureaucrats. Others say many providers believed up until the last minute that a special waiver would be created just for Dane County.

Yet others, like Green, say there haven't been any problems at all. "If there are problems it's not on our side," Green says. "We developed a system to get information to the new providers in a timely and accurate way to aid the transition."

Breedlove says the state clearly "overpromised" and could have done a better job. He suggests much of the frustration stems from Family Care falling short of Dane County's program.

"People are going to have a difficult time adjusting to this new standard," he says.

And there is no question there are kinks to be worked out. Until February, Options in Community Living billed one entity for the client services it provides. Now it bills seven, says Turner. The shortened transition window and delays in payment authorizations have overwhelmed state-contracted payment processors.

The bottleneck has left providers struggling to cover expenses. Options in Community Living's staff provides support for anything that comes up in a person's life, from personal hygiene to figuring out who to call when a wheelchair breaks.

"Most of us didn't get paid two weeks ago," Turner, who also chairs the Developmental Disabilities Coalition of Dane County, said in late March. "That's creating something of a financial crisis for vendors."

Since early March, the payment delay has been extended multiple times, most recently due to difficulties one billed entity had with opening email attachments.

"First, they couldn't open an attachment, then they didn't get the attachment; and others said to send Excel spreadsheets and then suddenly they aren't using Excel spreadsheets, they have to be PDFs, but then that didn't work," she explains. "So then we go back to spreadsheet billing and did it a different way, resubmitted it all, but they could only see one page, not all pages."

To pay its 275 employees, many who live paycheck to paycheck, the 35-year-old nonprofit opened a line of credit, which required finding a bank that would extend credit on receivables.

"It'll get worked out," Turner says, "but it's been exhausting for everybody."

McCormick paid out-of-pocket for respite in order to attend her sister's funeral. She doesn't begrudge the new care managers, who she says are overwhelmed with impossible caseloads.

McCormick, who recently turned 74, is hopeful the wrinkles will get ironed out.

"I just continue to take care of people to the best of my ability," she says. "It's just part of my life, you know?"

In March, she submitted her first invoice following a $i,ooo-per-month reduction in pay.

No provider found, the system replied.

"It's all of these little things that add up," she says. "Who the hell knows what happens in the case of an emergency." *