By Rebekah Sager for The Wisconsin Independent.
Broadcast version by Judith Ruiz-Branch for Wisconsin News Connection, reporting for The Wisconsin Independent/Public News Service Collaboration.
Megan Lowe says that without Medicaid, she and her husband, Josh, would likely go into debt to pay for their daughter Norah’s care.
In July, President Donald Trump signed the One Big Beautiful Bill Act into law, bringing cuts of around $1 trillion to federal Medicaid spending from 2025 through 2034. The cuts are predicted to result in a loss of the health insurance coverage affecting around 80 million lower-income Americans, including children and people with disabilities.
Norah, 17, suffers from Rett syndrome, a genetic neurological disorder that affects brain development. The syndrome, which mostly impacts females, causes patients to lose muscle control and the ability to speak and walk, and can cause seizures. Most patients with Rett syndrome will develop intellectual disabilities; there is no cure.
Lowe said her family is fortunate to have medical insurance through her husband’s employer, but it does not cover all of Norah’s medical needs. Medicaid covers what it doesn’t.
Lowe said Medicaid covers Norah’s monthly feeding supplies, such as her gastrostomy tube and formula, which are around $1,700 a month; her diapers, around $400 a month; her wheelchair; and her communication device. It also covers respite care, time for her parents to take a break from their caregiver duties, as well as her in-home and school therapies.
“We wouldn’t have respite,” said Lowe, a member of a sixth-generation Wisconsin farming family. “It would just be really hard to make ends meet. Her care is extremely expensive. I honestly can’t even fathom being in that position, even with employer health care.”
Lowe noted one of her concerns when it comes to the possibility of losing Medicaid coverage is her daughter’s access to contraception, which is currently covered. “What are women with disabilities going to do there?” Lowe asked.
A study published in 2016 by the U.S. Department of Justice notes, “The rate of serious violent crime (rape or sexual assault, robbery, and aggravated assault) for persons with disabilities (12.7 per 1,000) was more than three times the rate for persons without disabilities (3.9 per 1,000).” According to the Guttmacher Institute, 10 states ban abortion even in cases of rape or incest.
Lowe said she’s also worried about what will happen if hospitals near her lose Medicaid funding.
“I mean, granted, we’re close to Madison, but it’s an hour away,” Lowe said. “That’s a great hospital, but we have three rural hospitals that are closer to us, that are at the risk of closing. It’s really scary.”
Lowe said her community of families with children who have Rett syndrome is preparing for the worst.
“A lot of the families that we know through our Rett syndrome network, they’re stockpiling syringes and feed bags and diapers, we’re just stockpiling everything because we don’t know when the rug is going to be pulled out,” Lowe said.
Lowe is also a breast cancer survivor. She mentioned the likely rise in cost of health insurance premiums for policies purchased on Affordable Care Act marketplaces and spoke of a friend who is currently under treatment for Stage 4 breast cancer and who has such a policy.
“Her monthly premium is going to go up to $1,500 a month with a $20,000 deductible,” Lowe said. “But then once she reaches the deductible, they only pay for 50% of anything past that, and that’s just for the basic catastrophic coverage, and she doesn’t know what she’s going to do.”
Expanded tax credits that subsidize premiums for insurance policies purchased on ACA marketplaces are set to expire at the end of 2025 unless Congress acts to extend them. If the credits are not extended, millions of Americans could be facing premiums that double or even triple in cost in 2026.
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