CEDAR RAPIDS, Iowa — Garrett Frey refuses to stand aside.
Frey has been paralyzed from the neck down for more than 37 of his 42 years. He spent decades rejecting government excuses when he and other disabled people were denied the support they needed to live in their own homes and participate in society.
Iowa won a significant case before the U.S. Supreme Court in 1999 after his school district refused to pay for the care he needed to continue attending high school in Cedar Rapids. He recently won another victory when a complaint he filed with federal officials forced Iowa to agree to increase Medicaid payments for caregivers to stay overnight with Frey so he wouldn't have to move into a nursing home.
“These are civil rights issues,” he said. “These are human rights issues.”
Frey delivers his thoughts a handful of words at a time, the pace of his speech following the rhythm of the artificial ventilator that pumps air into his lungs through a tube in his throat every few seconds.
His voice is quiet, but he tries to make himself heard.
Paralyzed in an accident at age 4, Frey uses a push-pull system to maneuver his wheelchair into courtrooms and into the hallways of the Iowa House of Representatives and the U.S. Capitol, where he advocates for policies that allow people with disabilities to live full lives.
“We're going to get there. It's going to take time, but I'm not going to just let it slide,” he said in an interview on the sunny patio of his Cedar Rapids home.
Frey emphasizes that anyone can find themselves in need of help if they suffer an accident or illness that prevents them from caring for themselves. He encourages other people with disabilities to cite his victories when seeking the services they are entitled to under federal law.
He has served on numerous local, state, and national boards and committees dedicated to disability rights. He writes emails and updates his website using voice commands and a sticker on his chin that can interact with his computer's camera.
His activism has attracted fans across the country.
“People like Garrett are so important because they are pioneers,” said Melanie Fontes Reiner, director of the U.S. Department of Health and Human Services' Office for Civil Rights.
In June, Fontes Reiner's office announced an agreement with the state of Iowa to resolve Frey's complaint that Medicaid pay rates were insufficient to allow him to hire and retain caregivers to provide nighttime care in his home.
Frey said he filed a federal complaint after being rebuffed by state officials. The agreement increased his wages from $15.50 an hour to $22 an hour, the federal agency said. It also made other changes designed to allow Frey to continue living in the home he shares with his mother and brother.
Fontes Rainer said state officials worked with her office to resolve Frey's complaint. She said she hopes others will take note of the outcome and speak up about problems they face in getting services that help them stay in their communities.
The federal administrator said she gets emotional when she sees how hard Frey and others fight for their rights. “You shouldn’t be pro-health care,” she said. “When I think about everything he’s gone through and the fact that he continues to use his 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 all Iowans have access to high-quality behavioral health, disability and aging services in their communities.”
This summer, Frey and his mother visited Washington, D.C., to attend the 25th anniversary celebration of the Supreme Court's decision. Olmstead v. L.C. In this landmark case, the judges said that people with disabilities have the right to live in their own communities, rather than in institutions, if their needs can be reasonably met.
During the ceremony, Frey was reminded that others were still inspired by his own Supreme Court case. Cedar Rapids School District v. Garrett F..
The 1999 case centered on the Frey family's claim that the school district should pay for the care Garrett needed to safely use a ventilator so he could continue to attend classes. School district officials said they should not have to pay for such care 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 a recent ceremony in Washington, D.C., Frey was approached by a California teenager. “He said, 'Are you Garrett F.? Thank you. I would never have been able to go to school without you,'” recalls Frey's mother, Charlene Frey.
The 13 year old fan was James McLellandwho breathes through a tube in his throat due to a genetic problem that interferes with his windpipe. His breathing apparatus requires constant monitoring and frequent cleaning by a nurse.
His mother, Jenny McLelland, said she shows printed copies Garrett F. a court order against the school administration when it asks for a nurse to be provided for James so that he can attend regular classes instead of being sent to a separate school.
“Because of the Supreme Court precedent, we didn't have to go into litigation, we just had to educate people,” she said in an interview.
James, who is entering eighth grade this school year, excels in his studies and enjoys playing drums in the band, his mother said. “James had a life that people like Garrett had to fight for,” she said. “These are the rights that are built brick by brick.”
Frey said he drew inspiration from earlier proponents, including Katie BeckettCedar Rapids resident who four decades ago brought national attention to the plight of disabled children forced to live away from their families. Beckett, who was partially paralyzed by encephalitis as an infant, spent nearly three years in the hospital. At the time, federal regulations prevented Beckett from paying for home care, even though it would have been far less expensive than a hospital.
In 1981, President Ronald Reagan denounced the situation as absurd and ordered administrators to find a way to send the young Iowan home. The Republican president's stance led to the creation of what is still known as Katie Beckett refuses, making it easier for families to obtain Medicaid coverage for home care of children with disabilities.
Frey knew Beckett and her mother, Julie Beckettand admired the way their forthrightness spurred reform. He also drew inspiration from a meeting with Tom Harkin, the longtime U.S. senator from Iowa who was the lead author of the 1990 Americans with Disabilities Act.
Harkin, a Democrat who retired from the Senate but keeps an eye on disability issues, said in an interview that he was glad to hear Frey was continuing to fight for the right to participate in society.
Harkin said he is frustrated when he sees government officials and business leaders fail to comply with the Americans with Disabilities Act. To uphold the law, people must speak out 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 payments for Frey’s caregivers has helped him hire more overnight workers, but he still spends some nights without them. When outside help isn’t available, his mother is his caregiver. Although she may be paid, she no longer wants to play that role. “She needs to be able to just be my mom,” he said.
At a recent board meeting of The Arc of Iowa, a disability rights group, Frey told friends he was thinking about applying for a federal civil rights job or running for public office.
“I'm ready to fight,” he said.