CEDAR RAPIDS, Iowa — Garret Frey refuses to sit on the sidelines.
Frey has been paralyzed from the neck down for more than 37 of his 42 years of life. He has spent decades rejecting government excuses when he and other people with disabilities are denied the support they need to live in their own homes and participate in society.
In 1999, the Iowa resident won a landmark case before the U.S. Supreme Court after his school district refused to pay for the care he needed to continue attending classes at Cedar Rapids High School. He recently scored another victory when a complaint he filed with federal officials pressured Iowa to agree to increase Medicaid payments for overnight caregivers so Frey wouldn’t have to move into a nursing home.
“These are civil rights issues,” he said. “These are human rights issues.”
Frey makes his arguments a handful of words at a time. The cadence of his speech follows the rhythm of a mechanical respirator, which pumps air into his lungs every few seconds through a tube in his throat.
His voice is soft, but he makes sure it is heard.
Frey was paralyzed in an accident at age 4. He uses sip-and-puff controls to navigate his wheelchair in courtrooms and through the halls of the Iowa Capitol and the U.S. Capitol, where he pushes for policies that allow people with disabilities to live full lives.
“We’ll get there. It takes time, but I’m not going to let things take their course,” he said in an interview on the sunny patio of his Cedar Rapids home.
Frey emphasizes that anyone may need help if they suffer an accident or illness that affects their ability to care for themselves. She encourages other people with disabilities to cite her victories when seeking the services they are entitled to under federal law.
She has served on numerous local, state and national boards and committees focused on protecting the rights of people with disabilities. She composes emails and updates her website using voice commands and a sticker on her chin that can interact with her computer camera.
Her activism has attracted admirers across the country.
“People like Garrett are incredibly important because they are pioneers,” said Melanie Fontes Rainer, director of the Office for Civil Rights at the U.S. Department of Health and Human Services.
In June, Fontes Rainer’s office announced a settlement with the state of Iowa to resolve Frey’s complaint that Medicaid payment rates were insufficient to hire and retain overnight caregivers at her home.
Frey said he filed his federal complaint after state officials rejected it. The resulting settlement raised his workers’ pay from about $15.50 to $22 an hour, the federal agency said. Other changes designed to allow Frey to continue living in the home he shares with his mother and brother were also made.
Fontes Rainer said state officials cooperated with her office to resolve Frey’s complaint. She said she hopes other people will take note of the outcome and report problems they have in obtaining services that help them stay in their communities.
The federal administrator said she gets emotional when she sees how hard Frey and others are fighting for their rights. “They shouldn’t have to defend health care,” she said. “When I think about everything she’s been through and how she continues to use her voice, I think it’s very powerful.”
The Iowa Department of Health and Human Services declined to comment on Frey’s case. But spokesman Alex Murphy said the department is “committed to ensuring access to high-quality behavioral health, disability and aging services for all Iowans in their communities.”
This summer, Frey and her mother visited Washington, D.C., where they participated in a celebration of the 25th anniversary of the Supreme Court decision. Olmstead vs. LC In that landmark case, the judges ruled that people with disabilities have the right to live in their own communities, rather than in an institution, if their needs can be reasonably met.
Frey recalled during the ceremony that others are still encouraged by his own Supreme Court case, Cedar Rapids Community School District v. Garrett F..
The 1999 case centered on the Frey family’s claim that the school district should pay for the help Garrett needed to safely use his respirator and continue attending school. School district leaders said they shouldn’t have to pay for that assistance because it was medical care.
The court, in a 7-2 decision, described Frey as “a friendly, creative and intelligent young man” who was entitled to services that would allow him to attend school with his peers.
At the recent ceremony in Washington, a teenager from California approached Frey. “He said, ‘Are you Garrett F? Thank you. Without you, I would never have been able to go to school,’” Frey’s mother, Charlene Frey, recalled.
The 13-year-old fan was James McLelland, who breathes through a tube in his throat due to a genetic condition that blocks the passage of his windpipe. His breathing apparatus needs constant monitoring and frequent cleaning by a nurse.
His mother, Jenny McLelland, said he shows printed copies of the Garrett F. court decision to school officials when it requests that James be provided with a nurse so that he can attend regular classes instead of being sent to a separate school.
Because of Supreme Court precedent, “we didn’t have to litigate, we just had to educate,” he said in an interview.
James, who is in eighth grade this school year, is doing well in class and loves playing percussion in the band, his mother said. “James has had the life that people like Garrett had to fight for,” she said. “These are the kinds of rights that are built brick by brick.”
Frey said she found inspiration in past advocates, including Katie Beckett, a Cedar Rapids resident who four decades ago brought national attention to the plight of children with disabilities forced to live away from their families. Beckett, who was partially paralyzed as an infant by encephalitis, was hospitalized for about three years. At the time, federal rules prevented Beckett from being paid to receive care at home, even though it would have been far less expensive than hospital care.
In 1981, President Ronald Reagan denounced the situation as absurd and asked administrators to find a way to allow the young woman from Iowa to return home. The Republican president’s stance led to the creation of what are still known as the Katie Beckett waivers, which make it easier for families to obtain Medicaid coverage for home care of children with disabilities.
Frey knew Beckett and her mother, Julie Beckett, and admired how her outspokenness pushed for reform. She was also inspired by meeting Tom Harkin, the veteran U.S. senator from Iowa who was the principal author of the Americans with Disabilities Act of 1990.
Harkin, a Democrat, is retired from the Senate but follows disability issues closely. In an interview, he said he was glad to hear that Frey was still fighting for the right to participate in society.
Harkin said he is disappointed when he sees government officials and business leaders failing to comply with the requirements set out in the Americans with Disabilities Act. To keep the law in place, people should speak up when they are denied services or accommodations, he said. “It’s important to have warriors like Garrett and his mother and their supporters.”
Iowa’s agreement to increase Medicaid payment for Frey’s caregivers has helped him hire more night workers, but he still goes some nights without one. When outside help isn’t available, his mother takes over his care. Although he can get paid, he no longer wants to play that role. “She should be able to just be my mother,” he said.
At a recent board meeting of The Arc of Iowa, a disability rights group, Frey told friends she is thinking about running for a civil rights job in the federal government or running for public office.
“I’m ready for the fight,” he said.
