After five and a half years as an inpatient at El Camino, Jimmy Campbell finally was able to go home to live with his parents, Jim and Glenna Cecchini.
"It's totally surreal. It's miraculous," said Glenna Cecchini. "We almost couldn't believe it was happening, after what we'd been through."
If it had been up to the Cecchinis, Jimmy would have come home a long time ago. Instead, they found themselves in a long struggle with a health care system that couldn't accommodate the unique needs of their son.
Jimmy, who is 43 years old, was diagnosed with an extremely rare neurological disease when he was 29. Rapidly, the disease destroyed his motor functions, so that he was confined first to a wheelchair and then a bed.
"He's cognitive. He's a man trapped in his body," Jim said.
By the time he was 38, he had become so incapacitated that his parents were forced to admit him to El Camino, where he came to require 24-hour skilled nursing care, to closely monitor his eating, breathing and especially his swallowing.
A side effect of Jimmy's disease is that he cannot properly swallow, and so his throat needs to be suctioned frequently to prevent him from choking. It is this particular feature of his condition that created a snag for Jimmy to receive full Medi-Cal coverage for at-home, 24-hour care, which costs about $250,000 a year.
On a technicality, officials in the Department of Health Services did not qualify the procedure as a medical treatment, and so would not give the Cecchinis the full amount of coverage they needed. Instead they offered $75,000 a year.
In turn, Jimmy's doctor would not discharge him from the hospital until he had adequate care, a position the Cecchinis respect because the doctor's opinion was that he would have died if he had been assigned to a nursing home.
"Jimmy's doctor was just a godsend," said Jim Cecchini, who is Jimmy's stepfather. "He really protected Jimmy in that hospital, and it wasn't as if he was keeping Jimmy against his will."
In fact, the Cecchinis say the hospital administration repeatedly tried in the first couple of years to discharge him, even offering the family $30,000 to take him home. But the Cecchinis and their doctor adamantly would not back down, and after a few years the hospital came to accept their longest-standing patient.
"I think Jimmy's purpose was to teach the hospital compassion," Glenna said. "I know he was the topic of many ethical discussions there."
Jimmy formed a tight bond with the sixth-floor nursing staff, and the Cecchinis say he was visibly saddened to say good-bye to them Tuesday.
"We got to know him as part of the family. He was like a son or a brother," said Shirley Paras, a nurse at the hospital who worked with him the entire five years. Paras said the longest she sees patients remain in the hospital is normally three months.
Jimmy greeted everyone with a huge smile, Paras said.
"We are going to have to get used to him not being here. Already people are saying, 'Oh my gosh, Jimmy's gone,'" Paras said, adding that "it was time for him to go home."
The road home began in earnest about 14 months ago, when the Cecchinis, feeling they were at the end of their rope, placed a call to Assemblywoman Sally Lieber, who represented Jimmy because he had in effect become a resident of Mountain View (the Cecchinis live in San Jose).
The Cecchinis, in Superior Court with the help of advocacy lawyers, had tried in vain to appeal an administrative law decision which denied Jimmy the DHS services he needed. Finally they contacted their local assembly office for assistance and were referred to Sally Lieber's office, since Jimmy had been residing in Mountain View for the past five years.
Enter Lieber, who the Cecchinis credit with doggedly pursuing the issue in the state legislature, understanding, from the beginning, that "the system had to be changed from within," Jim said.
"Sally was very receptive and a good listener. Her office stayed in communication with us and we never had to call them to keep the ball going. She really would not take 'no' for an answer," Glenna said.
"We obviously wanted to help in whatever way we could" Lieber said. "We love cracking tough cases."
Things started moving rapidly. Lieber wrote a letter to the secretary of health services explaining the situation, and arranged a meeting with the governor's top aide and officials from the department of health services.
Assembly members Joe Coto and Rebecca Cohn also stood behind Jimmy, and co-signed letters to DHS on his behalf to help resolve the issue.
Several days before Christmas in 2006, word came through to Lieber's office: The state had amended the waiver to allow patients like Jimmy Campbell to receive full coverage. Lieber's office was told by DHS that as many as 300 people in California might be eligible to receive at-home care under this waiver.
"It's inspiring because even though Jimmy is paralyzed, he impacted the lives of so many people. His struggle is heroic," Lieber said, citing the case as the most meaningful in her political career.
For the Cecchinis, Lieber's help was instrumental.
"She honestly restores your faith in government." Jim said.
Jimmy was able to come home last Tuesday, visiting with his brother, nephews and parents outside of the hospital for the first time in five years.
"He gives a thousand-watt smile every day," Glenna said. "He seems animated and happy."
The Cecchinis say it was the hard work of many people — including Jimmy's doctor, their advocacy lawyers and Lieber and her team — that brought him home.
"If anybody had given up, it wouldn't have happened for Jimmy. We needed them all," Glenna said.
"Jimmy's name is now synonymous with not giving up," Jim said.