Waiting lists end for Family Care, related long-term care programs

By: - March 11, 2021 6:32 am

Nursing home resident. Photo from https://www.pxfuel.com/

Wisconsin elderly and people with disabilities who need long-term care and qualify for Medicaid can now get the help they need immediately without going to a nursing home.

After more than two decades, state Medicaid waiting lists for long-term care outside nursing homes are empty, the state Department of Health Services (DHS) announced Wednesday.

The outcome changes the choices for people who face long-term care decisions, including people with physical, developmental and intellectual disabilities and the frail elderly.

“If you’re on Medicaid, you’ve always been able to go to a nursing home,” says Helen Marks Dicks, Wisconsin state advocacy director for the American Association of Retired Persons (AARP). “If you meet the qualifications, it gets paid for, there’s no waiting list.”

That same coverage now extends to people whose condition is severe enough to require the skilled nursing services that a nursing home or extended-care facility provides, but who would prefer to get that care at home or in the community. That is now an entitlement program for people whose health condition requires that level of care and who qualify for Medicaid. 

“There’s a lot of history to making sure that people have the right to live in a way that they want to in society,” says Curtis Cunningham, an assistant administrator with the DHS Division of Medicaid Services. For developmentally disabled people, for example, “this is a critical component to make sure they can live a fulfilling life.”

Besides helping people who want to stay home, it stretches the state’s Medicaid dollars.

“It saves the state a lot of money because it’s a lot cheaper to keep people in the community than to put them in a nursing home,” Dicks says.

Decades of history

Widespread use of Medicaid for community-based long-term care began in Wisconsin with Family Care, starting as a pilot project in five Wisconsin counties in 2000. Federal waivers allowed for Medicaid coverage for skilled nursing care in the community. Medicaid long-term care coverage is funded 60% by the federal government and 40% by the state.

Family Care has two allied programs, Family Care Partnership and PACE, which combine the provision of long-term care with ongoing medical care.

All three of those programs rely on managed care organizations to coordinate services. In 2008, an additional program, IRIS, extended the same concept to people wishing to exercise more control over their individual services. That program’s name is an acronym for “Include, Respect, I Self-Direct.”

“To be truly independent in the community, you want to be able to hire the people that you’re comfortable with taking care of you or providing you those services” such as bathing and other forms of personal care, Cunningham says.

IRIS provides consultants who help people in the program identify the services they need and select the providers directly. “And so those self-directed services allow people more autonomy to support themselves and live the way they want,” he adds.


Dicks of AARP says the expansion of Family Care statewide grew out of an attempt by former Gov. Scott Walker to privatize the program. Walker’s 2015 budget called for contracting Family Care and IRIS out to private insurance companies to manage.

“It didn’t go through, but it was one hell of a fight,” says Dicks. “It galvanized all the aging and disability advocates.”

The advocacy groups organized in opposition, and some Republicans on the Legislature’s Joint Finance Committee emerged as skeptics of the plan, leading the Walker administration to drop it in 2016.

After blocking the original privatization plan, says Dicks, the advocates persuaded the state to build a statewide expansion of Family Care and IRIS into the 2017 budget with a three-year timeline to eliminate the waiting lists and make the programs automatic Medicaid entitlements for people who qualified.

National leader

Originally, the state provided a fixed amount of Medicaid dollars to participating counties to cover a limited number of people through Family Care, Cunningham says. Counties that wanted to add more people had to provide the additional funding.

Once the budget expanded the program statewide, DHS and Medicaid took on the full cost of the program’s growth. Administration and rate negotiations allow for greater efficiencies that hold down costs, while saving as much as $2,000 a month for every person who can be cared for in the community instead of a nursing home.

The creation of Aging and Disability Resource Centers (ADRCs) around the state helped provide support for people participating in the programs. “What we want to do is make sure that people are correctly utilizing their resources to extend their time before they get on the Medicaid program,” Cunningham says.

The waiting list for the programs ended with 33 eligible people on it, who were then invited to enroll in Family Care or the related programs. According to DHS, 18 individuals accepted the opportunity. The last person to leave the list was a 40-year-old Adams County resident who joined the IRIS self-directed program on Feb. 28.

More than 77,000 people are currently enrolled, but that number could increase in future years.

“We have an aging population in Wisconsin,” Cunningham says. “This does put us in a very good position to make sure that elderly individuals that are at a nursing home level of care can remain in the home and community for as long as possible.”

Wisconsin is “now leading the nation in the ability to live in the community,” he adds. “Nursing homes are an important resource for people that need that level of car, especially the medical services that a nursing home can provide.”

But for many people needing long-term care, remaining at home is the preferred choice.

“They can live in the community and engage in the community in a way that’s beneficial to them,” Cunningham says. “It’s the way they want to be, and this provides those options.”

Our stories may be republished online or in print under Creative Commons license CC BY-NC-ND 4.0. We ask that you edit only for style or to shorten, provide proper attribution and link to our web site. Please see our republishing guidelines for use of photos and graphics.

Erik Gunn
Erik Gunn

Deputy Editor Erik Gunn reports and writes on work and the economy, health policy and related subjects, for the Wisconsin Examiner. He spent 24 years as a freelance writer for Milwaukee Magazine, Isthmus, The Progressive, BNA Inc., and other publications, winning awards for investigative reporting, feature writing, beat coverage, business writing, and commentary. An East Coast native, he previously covered labor for The Milwaukee Journal after reporting for newspapers in upstate New York and northern Illinois. He's a graduate of Beloit College (English Comp.) and the Columbia School of Journalism. Off hours he is the Examiner's resident Springsteen and Jackson Browne fanboy and model railroad nerd.