Checkup Finds Growing Pains Afflict County Managed Care

Davida Gregory doesn’t wonder if her kids are going to get sick, or whether they will need a doctor. With eight developmentally disabled children and young adults in her state-licensed group home, she knows one or the other will need medical attention at any given moment.

Sometimes, it’s an emergency, but more often it’s routine: A 24-year-old with cerebral palsy needs physical therapy to help her walk and retain what remains of her independence. Another woman, the same age, is just now learning to form understandable words. Gregory believes the patient’s rage and frustration would melt away if only she received the speech therapy an expert recommended months ago.

But these basic services, Gregory says, are maddeningly elusive in Orange County.

Since February, when thousands of disabled people were enrolled in Cal-OPTIMA, the county’s new managed care system for the poor and uninsured, Gregory and other caretakers say they spend hours each day wrangling with doctors, equipment suppliers and health planners in order to meet their charges’ basic medical needs.

In some ways, this tit-for-tat is typical of managed care: Payments to health care providers are fixed, services and supplies are more closely monitored and requests to see specialists are carefully scrutinized.

But when it comes to patients with persistent--and often costly--demands, some say managed care is falling short.

Under the old Medi-Cal system, patients chose their own doctors and specialists. But in an effort to save money, the state switched to managed care, which requires members to go through primary care providers to obtain specialty care.

So Gregory, and others like her, who have worked years to develop strong relationships with specialists whom they can phone at a moment’s notice, now must play a slower game, with different rules.

From the outset, organizers of the new system--the largest of its kind in the nation--knew that the 56,000 Medi-Cal recipients who are elderly, blind or disabled would require special attention. They say they invested extra time and resources on helping this population, among the most fragile of the 240,000 people Cal-OPTIMA has enrolled in its first year.

*

Indeed, most of the thousands of people they serve do not have bitter complaints about Cal-OPTIMA, officials there point out. Although some clients have had problems coordinating services through the new health care plans, the problems should be seen more as kinks to be ironed out, not irremediable flaws, administrators say.

Cal-OPTIMA officials also point out that every state that has undertaken to serve disabled people in a managed care program is finding it a challenge.

A federal report prepared last July for the General Accounting Office said: “Serving disabled beneficiaries through . . . managed care poses complex, new challenges to the states. To date, few states have significant experience with prepaid care for disabled Medicaid beneficiaries, many of whom have chronic conditions that require ongoing and costly specialty care.”

Dr. Margaret Beed, Cal-OPTIMA’s chief medical director, said the agency ultimately “will resolve all these things” and “become a model for others.”

It is a jolt to some patients and their advocates, she said, that they must now demonstrate clear need before receiving approval for services, including speech and physical therapy, which once were granted almost routinely.

“We are looking at the procedures patients are getting, making sure it’s the right procedure at the right time,” Beed said. “It is to make sure resources are expended properly.”

Summing up Cal-OPTIMA’s performance, Mary K. Dewane, its chief executive officer, said: “I believe our system already far, far exceeds the old fee-for-service system.”

But those who work with Cal-OPTIMA remain skeptical about improvements.

“They have nice P.R.,” said Rhys Burchill, director of the local developmental disabilities board, a state-funded agency that protects and advocates for disabled people’s legal and civil rights.

“They want to talk to you and they want to meet with you. But [after all that], things are still as bad as they were before.”

In a letter to Dewane this summer, Burchill complained that clients not only have difficulty gaining access to specialists, they also must struggle to get approval for supplies and medical equipment such as wheelchairs.

And in general, health maintenance organizations and other managed care plans with Cal-OPTIMA contracts do not always understand their obligations to patients, she said. Patients with questions frequently are bounced back and forth, without receiving good answers, between Cal-OPTIMA and the plans, Burchill said.

*

Tustin resident Karen Kelly, whose 26-year-old son, James, has multiple disabilities that require him to use throat and feeding tubes, says her experience with Cal-OPTIMA has exhausted her patience.

Why, she asks, did it take six months for her to get a one-month supply of parts for the throat tube?

“I would call the HMO and be on hold with three or four people for 40 minutes each,” she recalled. “Then I’d go back to the doctor to make sure he’d authorized them. I’d make multiple phone calls and visits.”

A glitch in August left Linda Nelson, adoptive mother to six children with disabilities, in a bind. For almost one month, she went without the stomach feeding tubes she needs for 4-year-old Katie, forcing her to clean and reuse the tubes that are supposed to be thrown out. The child also was left without urine bags. Nelson called the health plan, the suppliers, her children’s doctor and Cal-OPTIMA.

Their doctor, William Leonard, tried unsuccessfully to obtain the bags from the health care plan to which Cal-OPTIMA contracted service. In apparent frustration at the blitz of calls from the supply company, the health care plan and some from Nelson herself, Leonard wrote a letter to Nelson terminating her children as his patients.

The doctor wrote: “Our office is being bombarded by calls from you and from providers harassing us about getting medical supplies for your children. I did not set up the medical system and I cannot change its functioning. We are required to follow their procedures. We have done that unsuccessfully for you. I can do no more.”

Leonard declined to comment on the case.

Nelson finally got help from the Regional Center of Orange County, which serves about 8,500 developmentally disabled people in a variety of ways--including trouble-shooting for those who have difficulties with Cal-OPTIMA.

“There’s been confusion on everybody’s part on what was Cal-OPTIMA’s role and what was the health plan’s role,” said Dr. Arlene Downing, director of medical services for the regional center.

However, “at this point I’m still optimistic that these glitches can be worked out,” Downing said.

*

The problems with Cal-OPTIMA should not obscure the fact that there were severe troubles with the old Medi-Cal system, Downing said.

“Under the old way, you were told you should find a specialist and you had to go search out someone who would accept Medi-Cal. This way it’s the health plan’s responsibility to get them that service.”

But Gregory and her husband, Dirk Van Tatenhove, say that Cal-OPTIMA has not made it easier or speedier for their charges to see the specialist they desperately need.

In one case, six months after one expert not associated with Cal-OPTIMA did an extensive evaluation of 24-year-old Jennifer and recommended speech therapy for her, Cal-OPTIMA gave them approval for another evaluation, but not therapy itself, Van Tatenhove said.

Meanwhile, Jennifer’s communication skills, which had been steadily improving, now are starting to deteriorate, Gregory said.

For its part, Cal-OPTIMA and the CHOC Alliance, which provides some of Gregory’s residents services, believe they have provided service within required times.

In general, CHOC Alliance Executive Director Roger Austin said, Cal-OPTIMA works well, but it will take some patience, and some getting used to.

“It’s a brand-new system,” he said. “It takes a while to have people learn to use the system in a new way.”