Paralyzed man's independence at stake, it claims
By Alan Gustafson
Statesman Journal
Oregon
Paralyzed since he broke his neck in a 1996 diving accident, Clay Freeman depends on 11 machines and around-the-clock care to stay alive.
With assistance from in-home caregivers who took him to classes, Freeman graduated from Chemeketa Community College in 2006.
He also has relied on caregivers to take him to movies, on shopping trips and other outings, including school functions and sporting events for his five nieces and nephews.
Distressingly, the Salem quadriplegic has had a hard time retaining the caregivers who serve as his conduit to daily life. Some have burned out tending to his complex needs. Others have resigned to take less rigorous work that pays better.
When another caregiver called it quits early this month, Freeman, 34, was left with two of the five hands-on assistants he needs to monitor his machines and assist him with breathing, eating, toileting and more.
The caregiver crisis posed life-threatening complications for Freeman and crimped his federally mandated rights to live with as much independence as possible, according to a lawsuit brought against the state of Oregon on his behalf.
"Mr. Freeman is now at risk of being forced to live in a nursing facility 'an institutional setting' because he has been unable to hire and train three of the five personal attendants needed to meet his daily needs," states the lawsuit.
The federal civil-rights lawsuit asks that the state be required to provide enhanced caregiver compensation so that Freeman can hire the help he must have to deal with his daunting disabilities.
Under contract terms with the state, average pay for Oregon's 11,500 unionized home health care workers is slightly less than $10 per hour. To recruit and retain caregivers for Freeman, the state must pay at least $12.90 per hour, his lawyers say. The state also has to ensure that his caregivers get proper training, the lawsuit asserts.
A federal judge has issued a temporary ruling in Freeman's favor. A week ago, U.S. District Court Magistrate Thomas Coffin ordered the state to provide Freeman with five caregivers at the $12.90-per-hour rate. Coffin also directed the state to supply Freeman's caregivers with training provided by a licensed registered nurse.
Freeman's lawyers are asking for a permanent court order that would enforce the higher pay rate. Opposing lawyers are expected to make oral arguments before Coffin at a hearing this summer.
For Freeman, the temporary court order was a crucial victory, said one of his lawyers, Peter James of the Oregon Law Center in Salem.
"This is wonderful. I mean, this person's life was in danger, and I think the court recognized that and acted accordingly," he said.
Since the ruling, one additional caregiver has been enlisted to work with Freeman, pending completion of state hiring checks and other requirements. Efforts continue to land two more caregivers, bringing the total to five.
State officials declined comment on the suit Thursday.
"There's not a whole lot we can say except confirm that there is a suit," said Stephanie Soden, a spokeswoman for the Oregon Department of Justice, which is defending the state against the suit.
Named in the suit are the state Department of Human Services; Bruce Goldberg, human services director; and James Toews, head of the Seniors and People with Disabilities section of DHS.
Freeman's case casts a spotlight on a much-touted state program that provides Medicaid-eligible disabled people with in-home care. It has been praised for promoting independence for people who otherwise might be housed in nursing homes or other facilities.
Oregon was one of the first states to establish home-care services for federally supported Medicaid clients in 1981. Home care is a popular option for elderly and disabled clients because it allows them to stay in familiar settings and remain as independent as possible. Many clients pick their own caregivers.
Currently, about 11,000 Oregonians are enrolled in the program, Toews said Thursday.
"It's a huge part of Oregon's system; probably one of the biggest in-home programs in the country," he said. "The number of people that actually get almost 24-hour (per day) in-home care is a much, much, smaller number."
In past years, the innovative home-care system was plagued by revolving-door turnover rates among its work force. In 2000, Oregon voters supported a reform-minded ballot measure intended to improve the quality of care and accountability in the system.
Measure 99, passed by 63 percent of Oregon voters, amended the state constitution to create a Home Care Commission to set standards for caregivers, provide training and publish a registry of qualified workers.
The measure also gave workers the same rights as public employees to bargain collectively, except for the right to strike.
Determined to shed their status as an invisible work force, home-care workers voted to unionize in December 2001.
Since then, collective bargaining has brought modest pay raises for caregivers, along with modest reductions in turnover rates.
"We've gone through two or three collective bargaining rounds and now they get wages, benefits, workers compensation, a few days off," Toews said. "So it certainly has improved the turnover rates ... but it still is a work force that turns over pretty rapidly."
Freeman did not respond to a Statesman Journal request for an interview about his case.
But he asserted in a court document, dated June 3, that his own caregiver turnover problem began more than three years ago. He linked it to state cutbacks in pay for his lead caregiver "who then was paid $12.50 per hour" and additional pay cuts for his other attendants, who also formerly had received wages above the standard rate.
"This practice ceased about 31/2 years ago when my last grandfathered attendant left," Freeman asserted. "Since that time, the rate of pay has dropped to $9.90 per hour and I have been unable to find people to provide the level of care I need."
Amid caregiver scarcity, Freeman said he was unable to continue his course work at Western Oregon University in Monmouth, where he had been majoring in social sciences.
Freeman said that he made exhaustive but futile efforts to recruit caregivers, including "calling all of the people listed on the Home Care Commission's Web site and placing and renewing weekly an ad on
Craigslist and by advertising at Chemeketa and in the newspaper and at the employment office."
Recently, he stated, his situation became dire when another caregiver departed: "My third attendant left because she found a higher-paying job doing less work at a nursing home."
Freeman said it was hard for him to stave off fear as his two remaining caregivers put in long hours to meet his around-the-clock needs and monitor his extensive medical equipment, including a ventilator and a tracheotomy tube.
"My present situation is very precarious. I am experiencing a lot of anxiety and I fear that I will not be able to find sufficient caregivers without further financial aid and support from the state."
Cherishing his independence, Freeman remained adamant about staying in his own apartment.
"I am absolutely unwilling to go to an adult foster home or nursing facility, as I would lose my freedom to come and go as I please, I would lose my ability to choose my caregivers, I would lose my pets, and I believe that with my skin problems, general condition and depression, my overall health would significantly decline."
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Steve Gold, The Disability Odyssey continues
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