Sharon Braem says her daughter, Sara, never realized her younger years were different from those of other children. But her experiences set her apart.
Sara wore a wig to kindergarten after losing her hair to cancer treatment. She underwent surgery, chemotherapy and radiation at age 5 for a malignant brain tumor.
Then in 2014, at age 37, Sara collapsed with blood clots in both lungs.
As an adult living with physical and mental disabilities stemming from those conditions, Sara requires 24-hour care. It’s paid for by Medicaid, and Sara is among thousands of Wisconsinites who could lose specialized care if congressional Republicans and President Donald Trump follow through on efforts to cut billions of dollars in entitlement spending.
Sharon and her husband, Ron, live on Madison’s west side. They are both in their 80s and say they’re unable to care for their daughter themselves. Without Medicaid, they’re not sure what they would do.
“You lay awake at night thinking about it. You don't sleep well. You really want to break down and cry sometimes,” Sharon said.
In addition to Medicaid funding for her daily care, Sara receives Social Security disability benefits that pay for her rent, utilities and groceries each month.
Sharon, 81, and Ron, 87, also receive Social Security benefits as retirees. The couple fears that system might also be targeted by the Trump administration.
“If something happens to that, those funds are taken away, we're really going to be hurting,” Sharon said. “We’re not capable of taking care of her anymore.”
Sara is 48 now. She wears a brace on her leg and uses a wheelchair. Sharon said she would not be able to help her daughter shower or use the bathroom, simply because of her own physical limitations. A few years back, Sharon fell and broke her arm. Three years ago, Ron fell and broke his ankle.
“We’re elderly,” Sharon said. “It’s hard for us.”
Sara participated in special education throughout grade school in Middleton while she underwent treatment. She graduated from high school and began working for ETC (Electronic Theatre Controls), a Middleton-based company that manufactures lighting and rigging technology for entertainment.
“She was doing well. She even owned her own condo,” Ron said.
But when Sara collapsed in January 2014, she fell into a coma for six months. Her parents had to sell her home and, once she emerged from the coma, arrange for her care and find affordable housing that Sara could pay for with the $1,340 she receives monthly through federal disability benefits.
Sara is one of more than 1 million Wisconsinites enrolled in Medicaid, according to Kaiser Family Foundation, a national nonprofit that studies health policy.
As of 2024, Medicaid covered one in seven Wisconsin adults under age 64 and one in three working-age adults with disabilities, like Sara.
The Republican majority in the U.S. Senate is debating how to overhaul the country’s Medicaid program with the hopes of cutting spending to pay for a federal budget backed by Trump. The president has proposed extending his $4.6 trillion tax cuts from 2017, as well as increasing spending on the mass deportation of immigrants and on the U.S. military.
Trump has said he has no intention of cutting Medicaid, Medicare or Social Security. But Elon Musk, the billionaire Trump has tasked with slashing government spending, has said the public assistance system is loaded with “waste and fraud” — and experts say there’s no way to achieve budget cuts passed in the House without targeting benefits programs.
Sharon said many of her and Ron’s friends voted for Trump last November.
“But I hope they see now that he was all lies,” she said. “Look at the damage he’s done already.”
More intentional thought needs to be used in making spending decisions like these, Ron added.
“You make these cuts, you know, they're affecting people, so just take time and think of the people you're affecting,” he said. “That's the thing is the people on his staff, that's the last thing that occurs to them.”
Sharon and Ron care deeply for their daughter.
“She brings joy,” Sharon said.
On Saturdays, the couple bring their daughter to their west Madison home where they visit, share meals and play cards.
Sara lives with her cat, Remy, and enjoys watching professional wrestling.
“If you get to know her, she's got this little sarcastic personality. She can be very funny sometimes,” Sharon said.
Sara’s 49th birthday is coming up.
“April 17,” Ron said with a proud, fatherly smile.
But behind the joy of birthday party planning and weekend games of UNO, as parents, Sharon and Ron said they feel helpless, fearing a system they rely on so heavily could fail them after decades of ensuring their daughter is cared for.
The two have contacted their local members of Congress — Democratic U.S. Rep. Mark Pocan and Sen. Tammy Baldwin and Republican Sen. Ron Johnson — but don’t feel particularly hopeful it will affect much change.
“You just wish there was more that you could do, but we can't fix it. We can't fix her,” Sharon said. “We're just one voice.”
