COLUMBIA – Rob Levin looked at the visitor from his hospital bed and slowly raised his right arm to shake hands.
It was the most he could do to welcome a stranger.
A fall from a truck while photographing 9/11’s Ground Zero in New York in December 2001 left Levin, 45, with a brain injury, unable to walk or talk or to control his limbs.
But he has remained hospitalized since New Year’s Eve not because of the aspiration pneumonia that brought him there but because his mother can no longer take care of him at home without more help, and the state agency that coordinates his care has refused.
So Levin lies in a sort of medical limbo that costs the government about $3,400 a day, she says, compared to about $500 if he were cared for at home.
Though Levin’s case is unique, consumers and their families receiving services through the state Department of Disabilities and Special Needs and the state Department of Health and Human Services have gone to court in recent years to challenge caps state officials placed on home-based services in 2010. That's the year, they said, budget cuts forced them to do so.
The consumers, as those under state care are called, have argued that the caps are illegal when the patient is at risk of institutionalization, but the state has spent millions fighting to keep them in place in years of court hearings.
And despite Levin’s four months of hospitalization, state officials have argued he is not at risk of institutionalization.
“I am caught between the devil and the deep blue sea,” Levin’s mother, Mary Self, explained in an appeal. “Because the hospital is pressing for discharge, but DHHS continues to refuse to conduct the assessment that would clearly demonstrate that Rob is at risk of institutionalization, thereby prohibiting state agencies from imposing caps on his services, so that Rob could return home with the services his physician ordered.”
Deborah McPherson, a former DDSN commissioner and advocate, said it doesn't make sense that the state is willing to incur such a large hospital bill instead of approving home care with more service hours that will exceed the caps but ultimately cost less.
"I truly believe that it is more a case of where they have drawn a line in the sand and said we have caps in place and if we do it for this there are going to be other cases so, no we are not going to do it," she said. "It seems like what happens is families get forced in these situations with litigation over the years and you might have one small victory but yet you've done nothing to change the system. It's almost like they are being punished."
Levin’s doctors say he needs a “bare minimum” of 60 hours a week in nursing care if treated at home, plus attendant services for the hours in which a nurse is not present.
But the state has only authorized a total of 49 hours a week of care, and a maximum of 21 hours of nursing care, which works out to three hours a day, arguing those are the limits of the caps.
DDSN, which authorizes the hours of care Levin can receive, has indicated at times, according to Self, that it would authorize him to be placed in a DDSN regional center or nursing home. But his doctors and the agency say he requires skilled care. His doctors say the centers offer only intermediate care. One of his physicians argues that he would need one-on-one care if placed in a nursing home and would likely pick up infections while there.
“Without an order requiring respondent to provide the services requested in this motion, Levin will not receive the level of supervision he needs in any setting and his carefully established support team will be disbanded,” Levin’s lawyer argued to the court earlier this year. “He likely will not survive for seven or more years wading through the state’s futile process.”
A promising life
Levin’s life at one time gleamed with promise.
His father died in a car accident when Levin was a young child. His mother, a registered nurse, remarried four years later.
Levin was "brilliant" in school, his mother said, and took the SAT in the seventh grade.
He earned a bachelor of fine arts degree with a minor in photography from the Savannah College of Arts and Design in 1995, then moved to to New York and was working as a restoration artist in 2001 when the World Trade Centers were attacked.
Self said her son was so moved by the devastation that he wanted to create a pictorial with the new camera he got for Christmas. So he went to Ground Zero and climbed to the top of a recycling truck to gain a better view.
The driver of the truck, unaware Levin was on top, started to move the truck. A policeman yelled at the driver, Self said, to let him know Levin was on top but the driver did not speak English and slammed on the brakes, sending Levin to the pavement 12 feet below, where he landed on his head.
Because of the brain injury, Rob had emergency surgery that removed 15 percent of his right front temporal lobe, Self said. He spent four months in the hospital with more surgeries.
Self and her husband attempted then to move him to a nursing home in South Carolina. But of the 50 she contacted, Self said none would take him because of the severity of his injuries. Finally, she said, former Gov. Jim Hodges intervened and Rob was accepted at a nursing home facility in North Augusta.
He was on a ventilator, had a trach tube and was in a vegetative state then. Self and her husband made the 150-mile round trip daily to visit him. Self helped with his care so much that she said the facility wanted to hire her.
After four years, he was transferred to their home in Columbia in 2006, which his parents outfitted for his care.
DDSN approved attendant care services then of eight hours a day, seven days a week.
In 2009, she said, the hours were cut but she said she was told any appeal would be futile because of the caps.
In 2011, Levin, another disabled man, Richard Stogsdill, his mother and Levin’s mother filed a federal lawsuit against DHHS over the reductions, arguing the state had violated the two men’s rights under the Americans with Disabilities Act, the Rehabilitation Act and the Medicaid Act.
The South Carolina Court of Appeals has ruled that if someone is at risk of institutionalization, services should be provided without the limitation of caps.
Levin’s lawyer, Patricia Logan Harrison, has won several legal victories representing others in similar cases but a federal judge has thus far mostly dismissed Levin’s claims, though Harrison characterizes the case as the most “egregious” she has seen.
U.S. District Judge Joseph Anderson ruled in 2015 that Levin had not met the plaintiff’s burden of showing by a preponderance of evidence that the service reduction had placed him at serious risk of institutionalization.
“In doing so, the court is cognizant of Plaintiffs’ difficult situation and admires the heroic emotional and physical effort Self expends on a daily basis for her son’s benefit,” Anderson wrote in his order. “By all accounts, Self provides exemplary care for Levin, and the Court has no doubt that Self’s situation is one that most all can sympathize with. However, the Court is bound by the law and cannot allow emotional considerations to cloud the issues presented here.”
Until Levin’s hospitalization, Self and attendant care workers dealt with Levin’s complex medical problems, which include congestive heart failure, seizures, respiratory diseases, urinary tract infections and tube feedings.
Levin can be easily agitated, his mother explains in a hospital cafeteria, and can swing his right arm, grab or bite when angry. He can and has pulled out tubes from his body, including catheters. His health situation is both fragile and complex.
“You have to know what you’re doing with him or you’ll get hurt,” she says.
He also has to be watched closely and tended to around the clock because of the danger of aspiration and the long list of medications he takes.
Yet the lack of help has forced Self to make awful choices.
Last year, her husband was dying from brain cancer but Self could not be with him when he received his diagnosis or for treatments because she could not leave her son.
She cries as she recalls a conversation she had with her husband about the issue.
“He said, ‘You don’t need to worry about me,’” she said. “'You need to worry about him.'”
For a time she cared for both her husband and her son in separate hospital beds in her home. Her husband died last June.
Now 66, Self has her own medical problems, including diabetes, arthritis, a prolapsed uterus, thyroid and heart problems.
“My physician has warned me that I am a walking time bomb if I try to continue to provide the care to Rob that I have been providing and that the risk of my own incapacity is high,” she said in an affidavit filed in court.
Dr. Charles Shissias, one of Levin’s physicians, said in a sworn statement last year that while Levin can receive far better care at home and avoid health risks that would come with institutionalization, Self cannot shoulder the burden without significant help.
“His mother, who is a registered nurse, has provided excellent nursing care, providing opportunities for Rob to have interactions with non-disabled persons, stability, stimulation, and attention that he could never receive in a state facility or private nursing home,” he said. “My staff and I have worked with Rob’s mother for 10 years, personally witnessing her age over time and seeing her own physical strength decline, despite her heroic attempts to put up a good front and not complain.”
Shissias said that Levin would face increased risks if he was placed in an institution, and both nursing homes and DDSN’s regional centers do not offer the skilled level of care he needs.
“It would be medically inappropriate and extremely unsafe for Rob to be admitted to any facility that provided him with intermediate level of care or anything less than skilled nursing care,” he said. “Placing Rob in an ICF/ID, which is an institution that provides care for patients with intellectual disabilities would cause him to digress mentally and emotionally and would place him at risk of premature death.”
Placing him in an institution, he said, would likely lead to sepsis from bodily wounds and aspiration pneumonia. It would also be dangerous, he said, for him and others who might be cognitively impaired and aggressive because Levin “would be unable to defend himself, because he does not have the capacity to control his movements or to get away.”
Both Shissias, Levin’s neurologist, and Dr. Jeremy Crisp, his treating physician, have submitted affidavits saying Levin is at risk of institutionalization.
“If these hours are not provided, there is not just a risk of institutionalization but an unpreventable certainty that he will be institutionalized,” Shissias wrote in May 2016.
Levin's hospitalization has led to frequent problems, Self says, including bed sores, sores from a wrong-fitting catheter and a bed that is too short. Levin is 6 feet 5 inches tall.
The hospital has used chemical restraints to modify his agitation, Self says, which can be triggered by unfamiliar nurses or aides or suddenly facing a group of people.
He cannot talk but can groan, grind his teeth and scream, his only way of verbalizing frustration or pain. Harrison said during a recent episode, it took three people to control him.
"He was throwing pillows," she told a hearing officer. "He was literally grinding his teeth. The man is in pain, and he can't say, I need to pee and it hurts, because they haven't provided him a speech device."
Several blocks away from the hospital, in a nondescript conference room, a DHHS hearing officer is listening to an administrative appeal argued by Harrison, who is accompanied by Self and facing lawyers for the agency.
Harrison spent more than hour trying to admit evidence for the appeal, much of which was objected to by the agency’s lawyers who say the only issue that is relevant is the termination of services once Levin was admitted to a hospital.
Levin’s federal lawsuit also remains active, though the only issue being heard is whether the state retaliated against persons who have complained or who have exposed abuse or neglect of the disabled.
At the administrative hearing, Harrison argues a bevy of issues in her opening statement, including that cutting off Levin’s services is an attempt to moot the lawsuit because if Levin no longer has services under the DDSN program, he can no longer appeal the amount of hours he is receiving.
She said when services to him were reduced, the state did not provide any alternatives.
“They never told him nursing services were available,” she said.
The state has failed to establish standards to determine risk of institutionalization, she argued, and to determine medical necessity, in violation of federal regulation.
The state has failed to provide care for Levin in the least restrictive setting, Harrison argues, and has also failed to give proper weight to the opinions of Levin’s treating physicians, relying instead on a service coordinator who is neither a physician nor a nurse.
She said Levin also is complaining that no communication device has been provided even though it has been in his plan of care for years.
"This man has been segregated, he has been isolated, he has been kept in pain," she told the hearing officer. "And this woman who has devoted her life to taking care of him, who is an RN, who will take him home for one-seventh of what the state of South Carolina is paying, not counting the cost of these guys. It's just -- it should be a no brainer. The man needs to be home."
The state's case
Damon Wlodarczyk, a private lawyer representing the state in the case, says the reason Levin’s services were terminated this year is because federal regulation states program participants cannot continue to receive services while in the hospital.
That is the only issue that should be considered, he argues.
He also argued that he believes the services issue has been time-barred from consideration.
“So in addition to that and the fact that we're solely here on this termination of services, we believe that the (Code of Federal Regulations) controls," he said, "and that this court has no validity to award any services while he is in the hospital.".
The hearing goes on for most of the day. The hearing officer says he will decide at a later date.
Back at the hospital, Self looks at her son sitting in a chair in a waiting area. He’s been “off the chain,” she says, her slang for agitation.
“It frightens him when he is out of his element and he has been out of his element now for three months,” she said. “It’s excruciating seeing how much pain he’s going through, how much his body has diminished in strength.”