CEDAR RAPIDS, Iowa \u2014 Garret Frey refuses to be sidelined.<\/p>\n
Frey has been paralyzed from the neck down for more than 37 of his 42 years. He has spent decades rejecting the government\u2019s excuses when he and others with disabilities are denied the support they need to live in their own homes and to participate in society.<\/p>\n
The Iowan won a landmark case<\/a> 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\u2019t need to move into a nursing home.<\/p>\n \u201cThese are civil rights issues,\u201d he said. \u201cThey are human rights issues.\u201d<\/p>\n 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.<\/p>\n His voice is soft, but he makes sure it\u2019s heard.<\/p>\n 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.<\/p>\n \u201cWe\u2019ll get there. It takes time, but I\u2019m not going to just let things go or let things slide,\u201d he said in an interview on the sunny patio of his Cedar Rapids home.<\/p>\n 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\u2019re entitled to under federal law.<\/p>\n 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\u2019s camera.<\/p>\n His activism has drawn admirers nationwide.<\/p>\n \u201cPeople like Garret are critically important, because they are the trailblazers,\u201d said Melanie Fontes Rainer, director of the Office for Civil Rights at the U.S. Department of Health and Human Services.<\/p>\n In June, Fontes Rainer\u2019s office announced an agreement with the state of Iowa to settle Frey\u2019s complaint that Medicaid pay rates were insufficient for him to hire and retain overnight caregivers at his home.<\/p>\n Frey said he filed his federal complaint after being rebuffed by state officials. The resulting agreement increased his workers\u2019 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.<\/p>\n Fontes Rainer said state officials cooperated with her office in settling Frey\u2019s 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.<\/p>\n The federal administrator said she gets emotional when she sees how hard Frey and others fight for their rights. \u201cYou shouldn\u2019t have to advocate for health care,\u201d she said. \u201cWhen I think about all that he\u2019s been through, and that he continues to use his voice, I think it is so powerful.\u201d<\/p>\n The Iowa Department of Health and Human Services declined to comment on Frey\u2019s case. But spokesperson Alex Murphy said the department is \u201ccommitted to ensuring access to high-quality behavioral health, disability, and aging services for all Iowans in their communities.\u201d<\/p>\n This summer, Frey and his mother visited Washington, D.C., where they participated in a 25th anniversary celebration of the Supreme Court decision Olmstead v. L.C.<\/em><\/a> 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.<\/p>\n Frey was reminded during the ceremony that others are still buoyed by his own Supreme Court case, Cedar Rapids Community School District v. Garret F<\/em>.<\/a><\/p>\n The 1999 case focused on the Frey family\u2019s 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\u2019t have to pay for such assistance because it was health care.<\/p>\n The court, in a 7-2 decision, described Frey as \u201ca friendly, creative, and intelligent young man\u201d who had a right to services enabling him to attend school with his peers.<\/p>\n At the recent Washington ceremony, a California teenager approached Frey. \u201cHe said, \u2018You\u2019re Garret F? Thank you. Without you, I\u2019d never have been able to go to school,\u2019\u201d recalled Frey\u2019s mother, Charlene Frey.<\/p>\n The 13-year-old fan was James McLelland<\/a>, 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.<\/p>\n His mother, Jenny McLelland, said she shows printed copies of the Garret F.<\/em> 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.<\/p>\n Because of the Supreme Court precedent, \u201cwe didn\u2019t have to litigate, we just had to educate,\u201d she said in an interview.<\/p>\n James, who is entering eighth grade this school year, is thriving in classes and loves playing percussion in band, his mother said. \u201cJames has had the life that people like Garret had to fight to get,\u201d she said. \u201cThese are the kinds of rights that are built brick by brick.\u201d<\/p>\n Frey said he found inspiration from earlier advocates, including Katie Beckett<\/a>, 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.<\/p>\n 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\u2019s stance led to the creation of what are still known as Katie Beckett waivers,<\/a> which make it easier for families to get Medicaid coverage for in-home care for children with disabilities.<\/p>\n Frey knew Beckett and her mother, Julie Beckett<\/a>, 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 Americans with Disabilities Act<\/a>.<\/p>\n 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.<\/p>\n 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\u2019s power, people should speak up when they\u2019re denied services or accommodations, he said. \u201cIt\u2019s important to have warriors like Garret and his mother and their supporters.\u201d<\/p>\n Iowa\u2019s agreement to increase Medicaid pay for Frey\u2019s 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. \u201cShe should be able to just be my mom,\u201d he said.<\/p>\n At a recent board meeting of The Arc of Iowa, a disability rights group, Frey told his friends he\u2019s thinking about applying for a civil rights job with the federal government or running for public office.<\/p>\n \u201cI\u2019m ready to rumble,\u201d he said.<\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n