Lost in the Cracks of CalOPTIMA

Tina Carter has had a broken arm for 17 months. It curls at a crazy angle and occasionally swings out of control as she talks.

She sleeps on one side and has lost the use of the arm she used to eat with, write with and paint with. It would be painful for anybody, but for Carter--who is less than 3 feet tall, has a rare brittle bone condition and uses a wheelchair--it is nightmarish.

The Lake Forest resident says that she has been ignored and mistreated by Orange County’s pioneer managed-care program for those on public benefits--CalOPTIMA--and that she’s not alone.

Bryan Coe’s mother wakes up three times during the night to change his diapers. Genny Coe has done this for 21 years, ever since her son was born with permanent physical disabilities. He requires adult diapers at all times. He survives on liquid feeding supplements because he has difficulty swallowing. Last year, after he was forced to switch to a health plan under CalOPTIMA, Genny could not obtain necessary payment approvals for diapers or food for more than a month.

A class-action lawsuit was filed Tuesday on behalf of Carter, Coe and 33,000 others charging that Orange County’s most severely disabled have been shunted into HMOs and managed-care programs that are treating them improperly and denying them constitutionally guaranteed appeal rights.

“This is just not right; this is not the way it’s supposed to be,” said Melinda Bird, an attorney with Protection and Advocacy Inc. in Los Angeles. “We fought for these protections in the ‘70s, and now we have to fight all over again.”

But CalOPTIMA directors say that Bird and other attorneys sought out and found a small group of people who had slipped through the cracks while their innovative program was being started. They said a just-completed survey found that 85% of disabled clients who responded to the questions were happy with their services.

Mary Dewane, chief executive officer of CalOPTIMA, said, “The attorneys went out and solicited for clients. They found a small number of people who weren’t satisfied, who indeed our system did not serve as well as it could. But it is not fair to say this represents our whole system.”

Dewane and Dr. Margaret Beed acknowledged there were problems with start-up, especially since the state did not provide them with complete medical information on the disabled patients.

“That’s no excuse,” Bird retorted. “They should have been ready to do this right, or not done it.”

Carter and Coe are not suing for monetary damages. They simply want improved service and a guarantee that they will receive proper notice of why specific requests are denied and the right to appeal.

Dewane and Beed said their survey found that some work still needed to be done on the oversight of each patient by a primary care doctor and on wheelchair services. They also said they would investigate promptly whether the 20 health-care plans administered by CalOPTIMA were properly advising patients of why services were denied and that they had a right to grievance hearings and appeals.

“You can bet we’re looking into that,” spokeswoman Kathi Crowley said.

“Our aim is to provide access . . . which was often not provided under the old Medi-Cal fee system,” Dewane said.

But Coe, Carter and the others named in the suit described frustrating rounds of endless calls to health plan receptionists and nurses and to CalOPTIMA case management specialists, trying to obtain appointments, new doctors and reasons for denials of service.

Carter, 31, broke her arm in September 1995. She slipped in her bathroom while combing her hair and couldn’t get up. For several minutes, she screamed, trying to alert any neighbor. Then she rolled herself into the living room, managed to pull a telephone wire down, and dialed 911. At the emergency room, her arm was wrapped in bandages, and she was referred to a doctor.

Six weeks later, with her arm not healing, the doctor told her he could no longer treat her because she was being switched to CalOPTIMA. For the last year and a half, she has ping-ponged back and forth from her primary-care doctor to various specialists, trying to get approval for surgery with a doctor and a hospital she trusted and that knew about her condition. She also waited three months to get a tuneup for her wheelchair because she had to get repeated approvals from her primary-care physician.

“It’s like having to get a doctor to approve a car repair,” she said. “It doesn’t make sense.”

Carter said she that was contacted by an attorney from the Public Law Center in Santa Ana asking if she was having difficulties with CalOPTIMA and that she was only too glad to talk to them.

“It seemed like everybody started hopping around right away after she got involved,” she said of her attorney, Susan Eastman.

The medical director and director of case management for CalOPTIMA visited her home to see what they could do. An appointment with a Los Angeles specialist she had sought for a year was suddenly approved. Surgery was approved, she believes, and scheduled for March.

“I would have liked it tomorrow, but they said his schedule was busy,” she said Tuesday. “Actually I would have liked it last February, but at least it’s going to happen. I just wonder about all the other people who are in this plan.”

CalOPTIMA and state Department of Health officials said that they had tried to address the lawyers’ and patients’ concerns in discussions and that they are ready and willing to talk about settling the lawsuit.

Bird said she hoped the case could be settled without a trial also, but said, “I want a signed court order so we have the ability to get it enforced.”