When Felix Moffit was a baby, he developed and grew at the same rate as his twin sister. But at about a year and a half, he started to regress. He became completely nonverbal and was diagnosed with autism at age 2.

Felix qualified for a children’s long-term support waiver, funding that enables children with disabilities to receive services at home, rather than an institution. This allowed his family to get autism therapy that exceeded what their private insurance would cover. The therapy can be upwards of $100,000 for a year, and private insurance only covered about half of that, his mother Anna Moffit said.

Thanks to that therapy, Felix, now 10, can say about 100 words like “mom,” “school,” “pool” and “dog.” The next goal is learning to read.

But the waiver, and other programs that made Felix’s progress possible, are funded by Medicaid, and they’re potentially under threat, said Moffit, a member of the Madison School Board.

Moffit and other disability advocates in Madison say that restructuring Medicaid could lead to drastic cuts to crucial programs that help individuals with intellectual and developmental disabilities thrive and contribute to their communities.

“This will have a dramatic and negative impact on some of the most vulnerable people in our community,” Moffit said. 

The way Medicaid is currently set up, the federal government pays 60 percent of Wisconsin’s Medicaid costs. There’s no limit in this system; the more the state spends, the more the federal government supplements that spending. But the proposed American Health Care Act (AHCA) would put a cap on federal funds. 

Dane County has taken advantage of the current system, using Medicaid to create a rich system of support for individuals with disabilities, said Lisa Pugh, state director of the Arc Wisconsin, an organization that promotes the right of individuals with disabilities.

The county is invested in helping individuals with disabilities integrate into their neighborhoods, she said, and consequently 80 percent of adults with developmental disabilities have jobs in the community. 

“That is a direct result of the 60-40 funding match,” Pugh said.

Anne Morgan Giroux has a 22-year-old daughter with an intellectual disability. She lives in her own apartment and works over 30 hours a week at Noodles and Company and Target.

“She is able to do all this because of what she gets through Medicaid,” Giroux said. “A lot of times I think people think that people on Medicaid are a drain on the system.”

The AHCA proposes an entirely different federal-state set up: a block grant (a set amount of Medicaid funding for each state) or a per capita basis (a set amount of funding for each Medicaid enrollee). States would pick up the tab for anything spent over the limit.

The Urban Institute estimated that the change would mean Wisconsin would be responsible for an extra $1 billion over the next decade. 

Moffit said that means Wisconsin would have to find funds by making cuts elsewhere, reducing services, eliminating programs or creating tighter eligibility standards.

States are required to provide certain mandatory Mediciad benefits like hospital and physician services, nursing homes and family planning services.

But states are not required to fund many of the services that help individuals with disabilities, including physical therapy, prescription drugs, personal services, autism services, school supports and employment and residential supports for adults.

“They are expected to be the first to go when funding is tight,” Moffit said.

Every cut is crucial, Pugh said.

“Even one less hour of support for someone with a significant disability is a really big deal,” she said. “One less hour of transportation support might mean that someone doesn’t get to their job.”

But no one really knows what will be cut, Moffit said, and that ambiguity is scary.

“Nobody’s really saying what’s going to happen or who’s going to get the cuts, so we just really want people to be aware that it will have a huge impact, particularly for individuals with disabilities,” Moffit said.

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Pugh said she wishes politicians would more carefully consider that impact.

“The most frustrating part of this all is there were people who were willing to take a vote on something so quickly … (with) no idea how much money Wisconsin would be losing and what the real impacts of that decision would be,” Pugh said.

The Arc and other disability groups are working to make sure that legislators better understand the implications of any future health care bill they may vote on.

Politicians including Rep. Mark Pocan, Sen. Tammy Baldwin’s staff, Rep. Glenn Grothman, Rep. Sean Duffy’s staff and Rep. Mike Gallagher and his staff have met with disability advocates in their district. Ongoing calls and efforts are being made to meet with Rep. Gwen Moore, Rep. Ron Kind, Rep. Jim Sensenbrenner and Sen. Ron Johnson to arrange a conversation, Giroux said.

A statement from Speaker of the House Paul Ryan’s office argued that the AHCA will give states more control, which will better ensure care for vulnerable patients like the disabled.

“(The AHCA) will maximize state flexibility by providing the choice between a per capita allotment or a traditional block grant, depending on a state’s specific needs,” Ryan’s office said. 

It will also allow states to implement work requirements and help able-bodied patients transition to other coverage, Ryan’s office said: “Ultimately, by giving states new control to protect their populations, they can implement solutions that actually work for their most vulnerable—especially the aged and disabled. What works in Wisconsin may not translate to California or South Carolina.”

“We want to care for them, we want to care for our children,” said Walker said. 

Pugh said a typical politician’s answer can be, “Of course your program isn’t going to be cut, that’s not our intent.” But she doesn’t find that answer satisfying.

“I think it’s really not fair for someone to promise that those supports won’t be impacted by a potentially $1 billion cut to our state,” she said.

“People need to understand that’s who’s going to be hurt by those changes, and if they don’t find that acceptable, they need to speak out,” Moffit said. 

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Madison disability advocates speak out against proposed Medicaid changes