That’s the population that Kansas policymakers had in mind when they created the WORK program in 2006. They’re mostly developmentally disabled adults who want to work, but require a little assistance around the house to stay independent. So the Kansas Medicaid office provides them with a cash allotment (averaging just under $1,700 per month) to pay for the help they need. WORK enrollees can hire an in-home aide or purchase other services themselves—or a state case worker will do the legwork for them.
It’s a small program—277 people were enrolled in June 2012—but it makes a big difference for its participants. Kathy Lobb, a 56-year-old with cerebral palsy, is one of them.
Kathy works 20 hours a week as a legislative liaison at the Self Advocate Coalition of Kansas (SACK), a statewide advocacy group that works on behalf of adults with developmental disabilities. Her work has included testifying before the Kansas legislature. But on a day to day basis, Kathy’s condition made it difficult for her to live on her own and work at the same time. Keeping track of her work schedule, running errands and maintaining a clean household—things most people take for granted—were a struggle for her.
As Mary Ellen Wright, who oversees the WORK program in the Kansas Medicaid office, explains, the financial assistance that people like Kathy receive from the federal government sometimes discourages them from working. The state’s Medicaid buy-in program had the same effect. Those who make too much to normally qualify for Medicaid but still have significant medical needs, can “buy in” to the program to get additional coverage. The amount of their own money they have to spend before the state support kicks in is on a sliding scale, based on how much money they make at their jobs.
“The higher your income goes up by working, the more you would have to pay for your care,” Wright says. “So people wouldn’t necessarily want to go to work because it’s not going to make their lifestyle any better.”
And even for those like Kathy who have jobs they’re passionate about, the routine can still be difficult. But through WORK, Kathy receives a monthly stipend to hire an aide who comes to her house for a few hours a day to help her out. Kathy picked the aide herself, putting her through a rigorous interview, she says with a laugh. The aide keeps Kathy on schedule for work, takes her on errands when she needs to go out, makes sure her house is sanitary and has even started her on a low-calorie diet so Kathy can lose some weight. She and other WORK participants also pay a premium into the state Medicaid program for other health coverage (between $55 and $152 monthly, depending on income, significantly less than they’d pay under the normal buy-in model) that ensures all their medical needs are covered.
With a little more structure and a little more money in her pocket, Kathy has stayed on at SACK and continues to advocate in front of state lawmakers for others in similar situations. She’s also started taking classes at the University of Kansas Disability Rights Center.
“Before, I just tried to do the best I could,” Kathy says. “But this program has made it much easier.”
Though stories like Kathy’s can be encouraging, state officials still know they’re working with limited resources for a unique program like WORK. The cash allotments cost Kansas about $5.6 million for the year. The amount that an individual receives is based on an independent analysis of their needs: it could be a personal assistant, like Kathy has, or an in-home medical device or a counseling service. Because WORK recipients have a limited budget, they’re expected to make smart financial decisions. For example, it might be cheaper for them to buy a microwave with their stipend instead of hiring an aide to fix their meals.
“The idea behind it is, if the people are controlling the money, maybe they’ll make better decisions than we will as a state doing it on the group level,” says Wright. “They’ll try to get the best bang for their buck, so to speak.”
So-called individual budget plans for long-term care aren’t necessarily new; 10 states had active programs or pilot programs in 2006, according to the Kaiser Family Foundation. But they’ve usually focused on the elderly, and helping people stay employed has never been one of their main goals. That could change, though. Wright says her office has fielded numerous calls from other states interested in emulating the WORK program.
And the early indication in Kansas is that the program’s population is less costly to the state. A University of Kansas analysis found that the Medicaid office spent $1,933 per member per month in 2010 on WORK enrollees—significantly less than the $3,254 the state spent on a comparable population enrolled in more traditional home and community-based care.
“People who are working are healthier. You’re more a part of a community,” Wright says. “If you have more money, you just live better.”
