Despite needing help for routine tasks, he was able to earn a master’s degree from the University of Wisconsin-Whitewater in business administration. The services Lee receives allow him to live in his home, a cheaper arrangement than if he lived in a nursing home.
But he and others living with disabilities fear a nursing home may soon be their fate.
Though efforts to repeal the Affordable Care Act (ACA) have stalled, the aid Lee and thousands of other people with disabilities in Wisconsin receive could see significant cuts if congressional Republicans succeed in reducing federal funding for the half-century old Medicaid.
Still reeling from a potential 30 percent cut to the program under the U.S. Senate’s recent “skinny repeal” proposal, advocates and people with disabilities say they fear capped enrollments, elimination of services and fewer options for requiring long-term care.
GOP lawmakers say they want to slow the federal-state program’s growth.
Wisconsin Gov. Scott Walker said in a recent statement the best way to repeal the ACA would be “to give each state the resources and responsibility for health care” and provide states with block grants to make their own decisions on health care.
But some are skeptical.
Lee said he feels the voices representing people with disabilities have been absent in the discussions.
“Medicaid should be taken up as a separate issue,” Lee said. “And the repeal and replacement of Obamacare should not come at the expense of older Americans or people with disabilities, but instead should be taken up as a separate issue.”
Children and non-elderly adults account for the majority of Wisconsin’s Medicaid enrollees, but people with disabilities and seniors totals about three-quarters of the program’s expenditure, according to information from the Kaiser Family Foundation.
Nursing home care is required under the program but comes at a higher cost, and states could decide whether they’ll still offer optional services.
Earlier this year, the Center on Budget and Policy Priorities warned that cuts to Medicaid would likely see reductions to optional programs if states faced budget shortfalls.
Lee, along with some 250 St. Croix County residents, gets support through Wisconsin’s Include, Respect, I Self-Direct (IRIS) program. It gives adults with disabilities a set budget to manage their long-term care based on their needs.
Medicaid-funded home services typically include a visiting nurse or nurse practitioner and a personal care assistant to help with daily activities, like dressing, hygiene and transportation. The programs also pay for adaptive modifications to homes, such as widening doors and installing fall-prevention grab bars in bathrooms.
Home-based services are not a required part of Medicaid but represent a large share of the federal-state program’s spending. About 40 percent of Medicaid dollars support IRIS and other state programs, such as Family Care and Community Options.
Advocates say the programs allow them to work in their communities and remain in their homes, which costs about two-thirds less than nursing or group homes.
“It helps them be able to make their own decisions and stay out of the institutional settings,” said Beth Swedeen, the executive director of the Wisconsin Board for People with Developmental Disabilities.
Recent shortages in care workers may lead to high patient caseloads in nursing or group homes, Swedeen said. She and other advocates say they view potential cuts to Medicaid as more of a civil rights issue than a policy issue.
Medicaid funding for people with disabilities hasn’t kept up with rising demands for in-home care, said Peg Gagnon, the executive director for Hudson-based BRIDGE for Community Life. The group works with young adults by helping them find jobs and transition into adulthood from high school.
Gagnon said BRIDGE and Medicaid providers would need to scale back operations if clients had fewer funds to use for services like transportation, job coaching and daily living skills support.
“It would be devastating,” she said.
Others say they worry Medicaid cutbacks may force parents to drop out of the workforce to fill the role of a care provider.
George Zaske of River Falls helps care for his 20-year-old son, Franklin, who has an intellectual disability and a condition that causes seizures.
His son receives help through IRIS, but Zaske said he still dedicates several hours each day to ensure his son gets to work and takes his medication. Because his son requires immediate help during an emergency, Zaske has opted to take on fewer cases in his law practice.
Franklin Zaske works about 18 hours each week at the Chicone’s Liquor store in Hudson through a partnership with BRIDGE.
His father said he hopes his son will eventually be able to live on his own but worries potential cuts could derail that goal.
“To live in the community, you need these optional services,” George Zaske said. “But if you cut these optional services, at some point in time, you’re going to get shoved into a nursing home.”