Twenty-five-year-old Wilde Rose Johnson has an avid interest in art classes, going to the movies, and being an active member of her community, despite living with multiple disabilities – including cerebral palsy.
In fact, Wilde Rose – a former Cordova resident – sometimes volunteers with her mother, Janet Johnson, for fundraisers to help others with disabilities.
“We have been making things that can be sold at auction,” said Janice Johnson. “We are making braided rugs out of material that was donated. She and I are working on that because she can use her hands to braid. She loves doing that.”
Wilde Rose, like her mother, also enjoys testifying at legislative hearings to advocate for others on Medicaid – a system now facing cuts of billions of dollars as part of a President Donald Trump’s effort to lower the federal budget, which has for years been in debt.
A registered voter, she began meeting with her legislators when she was just 4 years old.
A recent piece of federal legislation, which has passed the U.S. House and now goes to the Senate, calls for severe cuts in funding to be received by each state. Alaska’s lone member of the U.S. House, Rep. Nick Begich, R-Alaska voted in favor of the House resolution, which passed 217-215.
Alaska currently receives $1.8 billion in federal Medicaid funds. The program benefits 38% of people birthing their babies in Alaska, as well as their post-natal care. Medicaid also helps seven in nine older Alaskans in nursing homes and in tribal health care systems, and ensures health care access for residents of rural Alaska.
According to the state budget, enacted in 2023, Alaska spends $2.8 billion a year on Medicaid. Of that total, the state currently contributes about $730 million, and the federal government puts in $2.1 billion.
“My concern is we already have a system that is underfunded, and we are going to have a greater need as more people are getting older,” Janice Johnson said.
The New York Times on Feb. 26 reported that Republicans are looking for ways to come up with Trump’s tax cuts by cutting the federal share of Medicaid, specifically with a proposal that would effectively gut the Affordable Care Act’s 2014 expansion of the program.
And the cuts, if they get approved, could affect people like Wilde Rose in Alaska.
She has a Medicaid waiver, which is a federal approval that allows states to bend Medicaid rules to expand coverage and improve care. Waivers help people with disabilities or chronic health conditions live in their homes or communities instead of in nursing homes.
“We had to go through an appeals process,” her mother said. “That was when she was 2 years old. It took us about a year or so, so she could be in an assisted living home and have caregivers. They finally put more money into Medicaid so they could pay caregivers, and now they are talking about taking it away.”
Over the many years that Wilde Rose and her family lived in Cordova, the community banded to enrich their lives.
“It was like a Hallmark movie,” said Janet Johnson. “If we didn’t have a physical therapist the town came together, provided occupational therapy. We had art classes at the library with Paula Payne. The U.S. Forest Service in Cordova took Wilde Rose and a whole crew of other disabled kids to go camping on a remote island when she was a kid, around 10 or 12 years old.”
She described other enrichment activities her daughter had access to while living in Cordova – including taking a sea kayaking trip, and going downhill skiing locally and at Alyeska with other kids with disabilities.
The family has also made a lengthy trip to the Lower 48 to see the Rocky Mountains, Yellowstone National Park, and the home of the late singer Elvis Presley. (Wilde Rose is a huge Elvis fan.)
“I want people with disabilities to be out in their communities,” Janice Johnson said. “Whatever town you are in, there are things you want to do.”
In Anchorage, where Wilde Rose currently resides in a small nursing home, federal mandates allow her just 12 hours a week outside of the facility, because of the need of a caregiver. Her mother works in Anchorage as an acquired brain injury advocate for Access Alaska, another entity that gets reimbursements from Medicaid, but has time to be her daughter’s caregiver during their time out in the community.
Meanwhile, Wilde Rose’s father, who is hospitalized, has also applied for and is waiting to get accepted for Medicaid.
But the potential cuts to the program aren’t stopping Wilde Rose, just like her disabilities don’t slow her down.
A close family friend is getting married next fall in Jamaica and has asked Wilde Rose to be her maid of honor. Her mother said she plans to travel with her so her daughter can participate in the wedding.
Correction: A previous version of this story referenced Medicare instead of Medicaid.
