Every disability is different, every person unique. But vent-using quads face challenges and risks that go beyond what is considered normal even in the disability community. To survive and thrive takes creative problem-solving ability, a strong will, perseverance, and luck. It also takes dedicated caregivers who are capable and committed. In 2008, an Oregon quad led the way for vent users across the nation by stubbornly advocating for higher wages and adequate training for his caregivers — and he did it selflessly. New Mobility is proud to honor Clay Freeman as our 2008 Person of the Year.
Clay Teckmeyer (“Tecky”) Freeman, 34, had been fighting the state of Oregon for years over personal care attendant issues — qualifications, availability, training, pay rate — but in spring 2008, down to only two PCAs for his complex 24/7 care, he became desperate. A vent user whose caregivers must manage up to 11 machines, some of them life-sustaining, Freeman decided he needed a different kind of help — the legal kind.
“I was very frustrated, so I e-mailed an angry letter out to 10-15 different organizations online, anybody that was advocating for quads with vents, or similar groups.” A copy of Freeman’s e-mail reached a couple in Portland, Ore., Joe and Pam VanderVeer, who ran a website called TheUnderrepresented.com. They forwarded it to Steve Gold, a nationally prominent disability rights attorney and advocate in Philadelphia.
“I got an e-mail from this guy in Oregon,” says Gold, “so I called him, and we e-mailed back and forth. He told me about his battles with the state, all these agencies he’d been fighting on his own. I could tell right off that Clay was really, really a fighter.” Gold then set up a conference call between himself, Freeman, the VanderVeers and a representative from Disability Rights Oregon.
Freeman made the 40-min ride in his van to Portland from his apartment in Salem and listened from a speaker phone in the VanderVeers’ house. He had never met the couple before. “After that first meeting, Steve and I talked by phone, and he said he would take the case.” Gold was convinced he could prove discrimination against Freeman. So he flew out to Portland and filed an emergency lawsuit.
“The fact that Clay’s two PCAs were underpaid and overworked put his life and freedom in danger,” says Gold. In other words, he could be forced into a nursing home or left alone in a critical situation. If so, it wouldn’t be the first time Freeman found himself in life-threatening circumstances.
Raised in the Woods
Freeman was born in McMinnville, Ore., and raised in timber country. His father had lived in Crescent City, Calif., in the redwoods, and Montana, before moving to Oregon and becoming a mill worker. And his grandfather had been superintendent of a plywood mill. “We’ve always been outside people,” says Freeman’s father — also named Clay.
When the younger Clay was born in 1974, he was named after his father’s best friend, Larry Teckmeyer, who was killed in the Vietnam War. Young Freeman came to be known as Tecky. In the 1980s, the Freemans were living in Valsetz, Ore. The plywood industry was struggling, and Boise Cascade decided to pull the plug on Valsetz and its 350 residents. “They owned the town so they shut the mill down and kicked everyone out of town — dads, moms, grandpas and grandmas, they just tossed them,” says Tecky. “Then they bulldozed the houses, burned the rubble and five years later drained the lake and replanted everything with trees. Today it’s nothing but forest.”
Tecky’s father relocated the family to nearby Falls City and found temporary mill work in distant towns, but he saw the handwriting on the wall. “I decided the future of plywood was gone,” he says, “so I went to appliance school to learn a new trade, but that would mean moving to an urban area, and Tecky loved it here. This was home, so we just stayed.” Eventually, on-the-job training qualified Tecky’s father to counsel people with developmental disabilities in Fairview, a state-run facility in Salem.
Tecky spent his childhood in and around the woods. “He loved it up there,” says his mother, Linda. “He was free to come and go as a kid. Not a lot of outsiders would come there, and everyone watched out for the kids.” Tecky and his dad would hunt and fish near the north fork of the Siletz or in the Valley of the Giants, a 50-acre preserve of 250-foot tall Douglas fir trees. Boise Cascade had deeded the old-growth stand to the Bureau of Land Management about the time Valsetz was shut down.
Tecky and his best friend, John Connelly, were at home in the forest. “We did a lot of camping, fishing, hunting, swimming, hiking and exploring together,” says Connelly. “We were inseparable.”
By the time Tecky graduated from high school in Falls City, he had attracted a close circle of friends who knew him as a big-hearted, fun-loving, athletic kid who loved the outdoors. One of the favorite gathering places was “the Falls” on the Little Luckiamute. Tecky and friends would spend their summers swimming and diving in the wooded paradise.
In 1996, Tecky, now 22, was building manufactured homes in McMinnville, and Connelly, a Marine, was based in San Diego. One day Connelly got an emergency call. Bad news: Tecky had been paralyzed in a diving accident. “Immediately I knew I had to go home no matter what, even if it meant going AWOL,” says Connelly. “I didn’t know if my best friend was going to survive.” Connelly managed to get emergency leave, and the next day he was on a plane to Portland.
“Tecky was a phenomenal swimmer and diver,” says Connelly. “He was also a prankster who could hold his breath underwater a very long time, so when he didn’t come up after diving, no one was worried, it was just another Tecky prank.” When his friends finally realized something was wrong, they pulled him off the bottom. He wasn’t breathing.
Tecky was barely revived. After several weeks, he was transferred to the University of Washington in Seattle for rehab. “I would fly up to Portland on long weekends. Friends and I would drive up to Seattle and kind of take over rehab,” says Connelly. “We’d sleep in our cars in the parking garage. They let us take showers in the hospital because we let it be known that nothing was going to keep us from being there. We were an outgoing, energetic group, and Tecky was the most important person in our lives.”
On His Own
Six months post-injury, Tecky went home to Falls City. As a vent-using quad, he was dependent on round-the-clock care. The burden fell on his family, and his mother shouldered most of the load.
Alterations were made to the Freemans’ older house, and Linda dedicated her life to her son’s care. Sometimes she would get much-needed sleep when the oldest daughter, whose family had moved next door, took over the night shift. Two days after Tecky moved home, a storm knocked the power out, but his dad had purchased a generator. “We were kind of paranoid,” says Linda. “Someone would always have to be up watching the respirator.”
The Freemans’ church family stepped up and supported them with money, manpower and prayer. One man from the church came and re-did their bathroom. Whenever Tecky bathed, he would have to be “bagged” with an Ambu bag, to prevent water from getting into his vent and lungs.
“After three years, Tecky was getting very depressed,” says his mother. “But one of his nurses was a godsend.” Sandy Shore was Tecky’s ICU nurse at Salem Hospital. She had made the drive to Seattle to visit him in rehab, and she continued coming to the Freemans’ house as a friend and taking Tecky out on all-day outings to give his mom a break, but also because she knew he needed to get out. “She made him get out and adjust to the world,” says his mother, “just because she cared for him and was a good person. They would go to the zoo or some other place, and gradually he gained confidence in his ability to be out and about and go to different places.”
One of Tecky’s physicians, Dr. Marvel, also made it a point to keep in touch. Tecky had that kind of personality. “He was magnetic,” says Connelly.
Near the end of 2000, Tecky decided to move out from his family home. “He needed to be his own man,” says his mother. “At first I didn’t like it, because to me he was my baby, but I knew he had to do it. He was also concerned about us getting burned out.”
“I think Tecky saw how hard it was on his mother,” says his father. “They are very, very close.”
At first he shared a house with a PCA. She took care of him during the graveyard shift and Tecky hired others for the day shifts. He was able to pay his PCAs nearly $10 per hour with the help of a $2 per hour upgrade (over minimum wage) authorized by the state’s in-home care program, one of the best in the nation. But the work was demanding and the turnover high. One live-in PCA gave way to another, and another. Some were reliable and dedicated, some just strange.
One of the live-ins, a motherly type, moved in with her pet bird, a robin. “The bird flew everywhere and left droppings all over the house,” says Tecky’s mother. “She fed it mealworms and crickets and was very messy. She slept with the bird. We found a drawer full of pills and mealworms and crickets. Later we found out she was bipolar.” Soon after this experience, Tecky decided he wanted an apartment of his own.
The Battle Begins
In 2002 he found an apartment in north Salem. By then, a caregivers union had organized and the state had a Home Care Commission. Faced with a growing home care budget, Oregon’s Department of Human Services took the position that Freeman’s PCAs would have to work for the union-negotiated basic caregiver wage rate of $8 per hour.
“I told them I’m not giving up that $10 an hour wage,” says Tecky. “You can’t expect my caregivers to give up $2 per hour. I fought them for one or two years until [with help from the union] they grandfathered in the $10 wage, but only for my existing PCAs, not new ones, and they didn’t give any cost of living raises.”
In time, as the grandfathered caregivers moved on, the wage dropped back down to the standard caregiver rate. It became more and more difficult to find people who were willing to provide specialized care at the standard rate. Fortunately, there were exceptions. Raylene Mayo, Freeman’s current primary caregiver — left a $14 an hour position in a skilled nursing unit to work for less than $10 an hour for over three years. “I like working for Clay a lot better than working for the nursing home,” says Mayo. “I can give him much better care than having to split up my time between 15 people.”
In spite of the unstable caregiver situation, Tecky managed to take classes at Chemeketa Community College and graduated in 2006. He then set his sights on earning a crisis counseling degree from Western Oregon University in Monmouth. Meanwhile, with an ongoing need for five PCAs round-the-clock and a wage rate that was going nowhere, good help was getting harder and harder to find.
According to a July 29, 2008 article in The Oregonian, more than 35 caregivers passed through Freeman’s apartment after the state ended the grandfathered-in $2 pay upgrade in 2004. Among those were a caregiver who worked a few days and left after stealing a month’s pain meds, another who turned down Freeman’s oxygen monitor because the alarm bothered her sleep, and a chain smoker with body odor so bad that the chair he used had to be thrown away.
Freeman found himself spending more and more time fighting the state — writing letters, attending union bargaining negotiations, advocating for his workers at state offices — and eventually had to suspend his quest for a degree in crisis counseling. Continual stress and lack of sleep from monitoring inadequately trained PCAs was taking its toll on his health. The battle for higher wages for his PCAs was getting the best of him. According to Karla Spence, the union negotiator, not only did the state no longer recognize Freeman’s need for specialized care, they even hinted that perhaps he belonged in a nursing home.
Eight years after Clay Freeman had moved out of his parents’ home, in the midst of his quest to become self-supporting, his right to live independently was under attack. The time had come to take the battle to a higher level.
When Steve Gold heard Freeman’s story, he instantly knew the source of discrimination. “The main issue is that those people with more severe disabilities do not have equal access to needed services in the same way that lesser disabled people do, and the reason is the dollar sign.”
In Freeman’s case, Oregon’s DHS was doing business with an agency that discriminated against a class of people — vent-using quads. “They would send nurses out to train PCAs for non-vent using quads, but they would not do the same for vent-using quads,” says Freeman.
When Gold flew out to Oregon for depositions, he caught the area DHS coordinator “disguising” the facts. “The coordinator was trying to cover the state’s butt,” says Freeman, “but what he was saying wasn’t true.” Freeman was not only present, he was seated opposite the coordinator, eyeballing him as Gold did all the talking. “That really threw him.”
The state claimed that Freeman was being too picky in not accepting the PCAs they would send out. “They said I rejected one woman because she was overweight,” says Freeman, “but this lady’s doctor had limited her lifting to 15 pounds because she had back problems related to her being overweight. How could I hire someone who couldn’t lift 15 pounds when I can’t lift myself?”
The coordinator also said that the state could not find any nurses to send out to train Freeman’s PCAs. What actually happened, according to Freeman, was the state’s contracted provider had sent out four nurses, but all four of them refused to train his PCAs because they knew their licenses did not qualify them to operate the medical machines they were supposed to train other PCAs to run.
“How could they call me picky,” says Freeman, “for insisting that my PCAs be properly trained when I have to entrust my life to them?”
The state was unable or unwilling to recognize the unique needs of a specific disability group – ventilated quads. “We are a very different group,” says Freeman. “We have a lot of unique needs. A ventilated quad might know most of a quad’s needs, but a regular quad might not know a vent quad’s needs.”
The Settlement … and the Future
On June 6, 2008, after considering the emergency lawsuit filed by Gold, DRO, and the Oregon Law Center, U.S. District Judge Thomas J. Coffin issued a temporary restraining order directing Oregon’s DHS to immediately grant Freeman’s request for a $3 an hour pay hike for his caregivers. A trial date of Oct. 28 was set, but the parties reached a settlement on Sept. 29.
Deciding not to seek a judgment was not an easy decision for Freeman. At first he was reluctant to consider settling. “I didn’t want to come all this way, after years of battling to get to this point, and then come away with something that others couldn’t use in their behalf. It wasn’t only about me. I wanted to set the kind of precedent that others could use in a court trial.”
In time Freeman began to realize that Gold was right in saying that they could get a better settlement — one that covered more ground – than if it were a court decision. And even though it would not have the final authority of a judicial ruling, it would be able to set the standard of care, and that standard could be used by other vent-using quads fighting for their rights in other states [see below].
In the settlement, both parties agreed to a $3 an hour pay raise over the current union-negotiated rate for all of Freeman’s present and future caregivers, or the latest union-negotiated rate, whichever was higher, plus extra pay for his lead caregiver. The state also promised to provide contract registered nurses for training of all new caregivers, who would be paid for time spent receiving training. Training in operating respiratory equipment would be provided by medical vendors. Other stipulations guaranteed a smooth transition to agreed-upon provisions.
Now that his PCA situation is regaining stability – as of late November he had three caregivers and a fourth was receiving training — Freeman is looking forward to recapturing one of his childhood loves — shooting, and possibly returning to the woods to hunt. He and a fellow quad from Corvallis, Ore., are looking at getting equipment to be able to fire guns again.
He is also intrigued by the story of a vent-using scuba diver in NM’s July 2008 issue. “I love to swim, spent hours swimming with the fish in the Little Luckiamute. My lung capacity had developed way beyond normal. We think that’s probably how I was able to survive drowning.”
Whatever it was, vent users across the nation should be grateful that Tecky is still around.