Disability Rights Activist Pushes Government To Let Him Participate in Society

Garret Frey, on the other hand, has no intention of being left on the bench. He has been a quadriplegic due to a diving accident at the age of 15 and has thus been confined to a wheelchair for more than 37 out of his 42 years. For over thirty years he has dismissed the government’s explanations why he and millions of other disabled people have been turned down for the necessary enablements that would allow them to live independently in their own homes and be active members of society. 
 
The Iowan had triumph in a highly publicized case before the U. S. Supreme Court in 1999, after his school district sought a way to avoid paying for the nursing care he required to continue attending his high school in Cedar Rapids to complete his junior and senior years. He scored another win recently when a complaint he filed with federal officials applied the pressure on Iowa to consent to up Medicaid payments for caregivers to spend the night with Frey so that he did not have to relocate to a nursing home for which the state pays $30,000 a month. 
 
‘These are civil rights issues,’ he said. “They are human rights issues,” 
 
Frey does this in a word or two at a time yet makes quite powerful arguments. The pace at which he talks is like that of a mechanical ventilator, an instrument that pumps air into his lungs every few seconds through a tube in his neck. 
 
He has a gentle inflection but he is not afraid to make himself be heard. 
 
Frey became a quadriplegic in an accident when he was only 4 years old. He uses sip-and-puff controls to drive his wheelchair into courtrooms and into the halls of the Iowa Statehouse and the U. S. Capitol to demand that people with disabilities can live rich lives. 
 
“We’ll get there,” he added to me during the interview on the sunny patio of his Cedar Rapids home, smiling while gesturing with his hands, “it just takes time, but I’m not going to just let things go or let things slide. ” 
 
In this connection, Frey explains that nobody is safe from requiring help for some reason or another — an accident, an illness that incapacitates a person and limits his/her ability to care for oneself. He often tells other disability activists to mention his victories when talking to officials in respect to services that the federal laws provide for disabled citizens. 
 
He has been a member of many local, state and national boards and committees in the matters of disability. He writes e-mails and even creates a website content with his assistance of voice and wearing a sticker on his face that responds to the camera of his computer. 
 
It remains that nowadays his activism draws supporters across the country. 
 
“People like Garret are critically important, because they are the trailblazers,” 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 reported an understanding with the state of Iowa to resolve Frey’s information that the Medicaid pay rates were not adequate for him to employ and maintain overnight caretakers in his house. 
 
Frey said he filed his federal complaint after being turned away by the state. The new deal boosted his workers’ wages from roughly $15 an hour down to. $50 to $22 an hour, the federal agency said. It also adopted other measures intended to enable Frey to remain in the residence he resides with his mother and brother. 
 
Speaking about the settlement of the Frey’s complaint that was investigated by Fontes Rainer’s office, the state officials were so instrumental. She said she expects others to follow her lead and report issues they have with receiving services that assist them to continue living in the community. 
 
The federal administrator said she gets emotional every time she witnesses how much effort Frey and the others put in the struggle for their rights. “No sane person should need to fight for health care,” she said. For example: ‘If I just think of everything that he has had to endure and that he still speaks up, I find that is so moving. ’ 
 
Regarding Frey’s case, the Iowa Department of Health and Human Services refused to give an interview on the matter. But the spokesman Alex Murphy affirmed that the department ‘is dedicated to delivering the quality behavioral health, disability and aging services regardless of the location of the Iowans’. 
 
One summer Frey and his mother came to Washington, D. C. , for a 25th anniversary commemoration of Olmstead v. L. C. In that case the Supreme Court held that individuals with disabilities have the right to live in the community and not in an institution if they can reasonably be provided for. 
 
During the ceremony, Frey was told that some are hoping for his Supreme Court case Cedar Rapids Community School District v. Garret F. 
 
The 1999 case was based on the Frey family’s claim that the plaintiffs’ school district should be required to provide help to Garret to operate the ventilator safely for him to remain in class. School district leaders argued that they did not need to be charged for such help because it was health care. 
 
In a decision split 7-2 the court deemed Frey as ‘a friendly, creative, intelligent young man’ who has a right to receive services that would permit him to be educated amongst his peers. 
 
During the recent Washington ceremony, a California teenager punched Frey. He said, ‘You’re Garret F? Thank you. Without you, I’d never have been able to go to school’ They said, the man told Charlene Frey, Frey’s mother. 
 
The lucky fan was a thirteen year old James McLelland, who has a condition with his wind pipe, which makes him breath through a tube in his throat. He requires constant examination of his breathing apparatus as well as the frequent re-cleaning by a nurse. 
 
His mother, Jenny McLelland, said she takes photocopies of the Garret F. court decision to school officials whenever she asks that James be given a nurse so that he can go to regular school instead of being sent to a different school for children with special needs. 
 
Due to the case that was established in the Supreme Court, what we had to do was not to go to court and fight cases but to teach, she said in interview. 
 
About James, his mother, who has custody of the boy, said he is excited about this school year and entering eighth grade; in classes, he is doing well, and he enjoys playing percussion in band. “James has had the life that people like Garret had to fight to get,” she said. “They are the kinds of rights that are established step by step. ” 
 
Frey said he drew from previous advocates; among them, Katie Beckett of Cedar Rapids who in the 1982 began to campaign and seek change for children with disability to be allowed to live with their parents. Beckett, who was partly paralyzed by encephalitis as an infant, was kept in a hospital for about three years. At the time, federal rules didn’t let Beckett get paid so she could get treatment at her home, even though it would be much cheaper than the hospital.

When he became president in 1981, Ronald Reagan addressing the issue, termed it absurd and instructed the administrators to come up with a way of discharging the young Iowan. The Republican president’s stance led to the creation of measures known as Katie Beckett waivers to go with Medicaid that make it easier for families to get coverage for at home care for children with disabilities. 
 
Frey said that she knew Beckett and her mum, Julie Beckett, and was fascinated by how their rudeness changed the world. He also was inspired while meeting a man named Tom Harkin – the senior US senator from Iowa and the author of the 1990 Americans with Disabilities Act. 
 
Harkin has left the Senate but still monitors issues to do with disabled people; he is a democrat. He stated during an interview that it pleased him to know that Frey still fights for the ability to be part of society. 
 
Harkin said he gets upset when he finds that some government and some business executives do not abide by the provisions under the Americans with Disabilities Act. But according to him, in order to keep the law potent the people should come forward when they are discriminated for services or accommodations. That is the kind of warriors Garret and his mother are and others like them who are fighting for the rights of people to be free from such cruelties. 
 
Iowa’s decision to raise Medicaid rates for Frey’s caregivers has enabled him to hire more overnight staff, but some nights he remains staff-less. Whenever outside assistance cannot be procured, his mother attends to him by herself. This must be interesting as, although she can be paid to play that role, she no longer wishes to do so. ‘She must be able to just be my mom,’ he said. 
 
Frey shared this in the recent board meeting of The Arc of Iowa organization that situates itself as a disability rights organization At one point he was overheard telling friends that he is contemplating to apply for a civil rights’ job at the federal or become a politician. 
 
“I’m ready to rumble,” he said, confirming this was the worst way to talk to another person.