CEDAR RAPIDS, Iowa 鈥 Garret Frey refuses to be sidelined.
Frey has been paralyzed from the neck down for more than 37 of his 42 years. He has spent decades rejecting the government鈥檚 excuses when he and others with disabilities are denied the support they need to live in their own homes and to participate in society.
The Iowan won 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 classes in Cedar Rapids. He recently scored another victory when a complaint he lodged with federal officials pressured Iowa to agree to increase Medicaid payments for caregivers to stay overnight with Frey so he won鈥檛 need to move into a nursing home.
鈥淭hese are civil rights issues,鈥 he said. 鈥淭hey are human rights issues.鈥
Frey makes his points a handful of words at a time. The cadence of his speech follows the rhythm of a mechanical ventilator, which pushes air into his lungs every few seconds through a tube in his throat.
His voice is soft, but he makes sure it鈥檚 heard.
Frey was paralyzed in an accident at age 4. He uses sip-and-puff controls to drive his wheelchair into courtrooms and through the halls of the Iowa Statehouse and the U.S. Capitol, where he demands policies that allow people with disabilities to live full lives.
鈥淲e鈥檒l get there. It takes time, but I鈥檓 not going to just let things go or let things slide,鈥 he said in an interview on the sunny patio of his Cedar Rapids home.
Frey emphasizes that anyone could find themselves needing assistance if they suffer an accident or illness that hampers their ability to care for themselves. He encourages other people with disabilities to cite his victories when seeking services they鈥檙e entitled to under federal law.
He has served on numerous local, state, and national boards and committees focused on protecting disability rights. He composes emails and updates his website using voice commands and a sticker on his chin that can interact with his computer鈥檚 camera.
His activism has drawn admirers nationwide.
鈥淧eople like Garret are critically important, because they are the trailblazers,鈥 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鈥檚 office announced an agreement with the state of Iowa to settle Frey鈥檚 complaint that Medicaid pay rates were insufficient for him to hire and retain overnight caregivers at his home.
Frey said he filed his federal complaint after being rebuffed by state officials. The resulting agreement increased his workers鈥 pay from about $15.50 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 cooperated with her office in settling Frey鈥檚 complaint. She said she hopes other people will take notice of the result and report problems they have in obtaining services that help them remain in their communities.
The federal administrator said she gets emotional when she sees how hard Frey and others fight for their rights. 鈥淵ou shouldn鈥檛 have to advocate for health care,鈥 she said. 鈥淲hen I think about all that he鈥檚 been through, and that he continues to use his voice, I think it is so powerful.鈥
The Iowa Department of Health and Human Services declined to comment on Frey鈥檚 case. But spokesperson Alex Murphy said the department is 鈥渃ommitted to ensuring access to high-quality behavioral health, disability, and aging services for all Iowans in their communities.鈥
This summer, Frey and his mother visited Washington, D.C., where they participated in a 25th anniversary celebration of the Supreme Court decision In that landmark case, the justices declared that people with disabilities have a right to live in their own communities, instead of in an institution, if their needs can be reasonably accommodated.
Frey was reminded during the ceremony that others are still buoyed by his own Supreme Court case,
The 1999 case focused on the Frey family鈥檚 contention that the school district should pay for help Garret needed to safely use his ventilator so he could continue to attend classes. School district leaders said they shouldn鈥檛 have to pay for such assistance because it was health care.
The court, in a 7-2 decision, described Frey as 鈥渁 friendly, creative, and intelligent young man鈥 who had a right to services enabling him to attend school with his peers.
At the recent Washington ceremony, a California teenager approached Frey. 鈥淗e said, 鈥榊ou鈥檙e Garret F? Thank you. Without you, I鈥檇 never have been able to go to school,鈥欌 recalled Frey鈥檚 mother, Charlene Frey.
The 13-year-old fan was , who breathes through a tube in his throat because of a genetic issue that impedes his windpipe. His breathing apparatus needs constant monitoring and frequent cleaning by a nurse.
His mother, Jenny McLelland, said she shows printed copies of the Garret F. court decision to school officials when she requests that James be provided with a nurse so he can attend regular classes instead of being sent to a separate school.
Because of the Supreme Court precedent, 鈥渨e didn鈥檛 have to litigate, we just had to educate,鈥 she said in an interview.
James, who is entering eighth grade this school year, is thriving in classes and loves playing percussion in band, his mother said. 鈥淛ames has had the life that people like Garret had to fight to get,鈥 she said. 鈥淭hese are the kinds of rights that are built brick by brick.鈥
Frey said he found inspiration from earlier advocates, including , a fellow Cedar Rapids resident who, four decades ago, drew national attention to the plight of children with disabilities who were forced to live away from their families. Beckett, who was partly paralyzed by encephalitis as an infant, was kept in a hospital for about three years. At the time, federal rules prevented payment for Beckett to receive care in her home, even though it would have been much less expensive than hospital care.
In 1981, President Ronald Reagan denounced the situation as absurd and told administrators to find a way to let the young Iowan go home. The Republican president鈥檚 stance led to the creation of what are still known as which make it easier for families to get Medicaid coverage for in-home care for children with disabilities.
Frey knew Beckett and her mother, , and admired how their outspokenness prompted reforms. He also drew inspiration from meeting Tom Harkin, the longtime U.S. senator from Iowa who was the lead author of the 1990 .
Harkin, a Democrat, is retired from the Senate but keeps tabs on disability issues. In an interview, he said he was glad to hear that Frey continues to push for the right to participate in society.
Harkin said he is disappointed when he sees government officials and business leaders fail to follow requirements under the Americans with Disabilities Act. To maintain the law鈥檚 power, people should speak up when they鈥檙e denied services or accommodations, he said. 鈥淚t鈥檚 important to have warriors like Garret and his mother and their supporters.鈥
Iowa鈥檚 agreement to increase Medicaid pay for Frey鈥檚 caregivers has helped him hire more overnight workers, but he still goes some nights without one. When no outside help is available, his mother handles his care. Although she can be paid, she no longer wants to play that role. 鈥淪he should be able to just be my mom,鈥 he said.
At a recent board meeting of The Arc of Iowa, a disability rights group, Frey told his friends he鈥檚 thinking about applying for a civil rights job with the federal government or running for public office.
鈥淚鈥檓 ready to rumble,鈥 he said.
