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With caregivers nearby, Bullers would be able to throttle his throat to signal an emergency. Bullers' wife, Anne, can't care for her husband all day. She works full time in public relations for Johnson County Community College. (The couple also has two children, ages 13 and 9.)
Bullers is appealing the state's decision to reduce his care by more than 75 percent, and this preserves his benefits for now.
"I remain optimistic, but I've always been optimistic," Bullers says. "The realist in me knows that state bureaucracy is an unwieldy thing that operates slowly."
Medicaid is a health program for low-income Americans that's funded jointly by states and the federal government. Several states have transferred segments of their Medicaid programs to private insurers to curb rising costs.
While other states have dipped their toes into the privatization of Medicaid, Kansas has cannonballed into the deep end by shifting all of its Medicaid management to three private companies.
"It is the most extensive in the nation," says Gary Blumenthal, a former Kansas legislator who is now CEO of the Association of Developmental Disabilities Providers in suburban Boston and a member of the federal National Council on Disability. "Other states have viewed managed care as an area to move slowly and cautiously in the use of managed care, to determine if the use of managed care can produce the savings that advocates claim can occur while preserving the quality and safety for people that it would be serving."
Florida, for example, started privatizing Medicaid by moving 9,000 seniors in nursing-home care to managed-care organizations. In the system, the state passes its Medicaid money to insurance companies, which then pay for providers. For states, the move is purported to cut the costs associated with running a bureaucracy by reducing hospitalizations and other medical costs. For the insurance companies, it's a new revenue stream.
For clients, it can be a mixed bag.
In 2012, Connecticut dumped the insurance companies that were managing its Medicaid program to the tune of more than $800 million a year. A USA Today report said those insurance companies were "erecting barriers to care" while plowing the state's Medicaid money into administrative salaries and profits.
States have moved areas like behavioral-health and acute-care Medicaid programs to managed-care organizations, which some experts believe can increase efficiency and cut costs. But many are leery of moving Medicaid recipients with long-term physical or developmental disabilities to private insurers, especially those receiving home- and community-based services as Bullers is; the only real way to cut costs on their care is to reduce the amount of care they receive.
"I think in some areas, managed care can be effective with respect to health-care services of a general population," Blumenthal says. "With respect to people with significant disabilities, it's very questionable how much can be achieved in savings without sacrificing the quality of services."
Bullers says his caregivers make $10.30 an hour from Medicaid reimbursements. That suggests a lean-running program.
In late 2011, Brownback approved KanCare through an administrative order, meaning that the Kansas Legislature didn't vote on the matter. KanCare went into effect in January 2013, so it's not yet known what kinds of savings the state may realize.
Earlier this year, Brownback announced that he would plow $9.2 million in savings from KanCare back into the Medicaid program to whittle 250 people (including 110 Johnson County residents) off the developmental-disabilities waiting list. The list totals 5,000 people, 900 of whom live in Johnson County.