The largest gap in care is a lack of sufficient follow-up and monitoring to assure that policyholders actually receive the full range of services they need, the study found.

This is the first comprehensive examination of consumer protections in long-term care insurance from the perspective of the policyholders themselves. Led by UC Berkeley professor of social welfare Andrew Scharlach and field consultant Barrie Robinson, researchers tracked 35 elderly policyholders through personal interviews and phone calls for six months during 1998 and 1999.

"We found that people generally were quite satisfied with their benefits," said Scharlach. "They were getting home care services paid for, just like they were supposed to. No one's claim was denied inappropriately. That's all to the good."

But he said that policyholders were dealing with a range of problems the insurance companies knew nothing about, such as theft by providers, helpers who did not show up, unmet needs for transportation, medication and other problems.

"Care managers" contracted by insurance companies to monitor the home assistance typically did not adequately track the care after an initial assessment of a policyholder's needs and development of a plan, said Scharlach.

"Care managers were helpful initially in getting the services that people needed," said Scharlach. "But we found many needs that the care managers apparently were not aware of."

In some cases, he said, policyholders chose not to reveal their condition, fearful that if they complained, they would lose benefits. But in most cases, the monitoring was too cursory to get good information.

"People, especially frail elderly people, need to know that when they call, care managers will know who they are by name. They have to build trust in you, and it takes time. For older people with complex physical and mental conditions, it doesn't work to come in, do an assessment, and simply give the policyholder a list of providers," said Scharlach.

Among the problems Scharlach's team identified that care managers were not aware of were the following:

* One provider took the client's car and didn't return it.
* Several providers didn't show up; one falsified time sheets.
* Depression, isolation and other social/emotional problems on the part of the client were not recognized or treated.
* Lack of transportation and other essential services went undocumented; medications were sometimes delayed.
* Overwhelmed caregivers in the client's family were not helped.

Most policyholders did not understand the concept of care management or how to use it, so they didn't ask for it, said Scharlach.

The UC Berkeley study looked at policies issued by six companies that cover most long-term care insurance in California. It was done in conjunction with the California Partnership for Long Term Care, a division of the state Department of Health Services, which worked with insurance companies to develop standards for care management. The Partnership provided seed money for the research aimed at improving care management. Additional funding was provided by the Retirement Research Foundation and the AARP Andrus Foundation.

Care Managers -the linchpin in dealing with disabled or frail elderly people - are advisors or advocates who, either privately or under contract with insurance companies, assess a client's needs and keep in touch with implementation plans. Ideally, they follow a policyholder's condition, advise and, in general, support the client in dealing with the long-term care system.

This study revealed, however, that consumers do not ask for, nor do insurance companies typically provide, a level of care management that could avoid many preventable, undesirable outcomes. These limitations in care management are found outside the insurance business as well, said Scharlach.

"There is a critical need for consumer education in the area of long-term care," said Scharlach. "Consumers need a much better understanding of what benefits are available to them and a much better understanding of the role of care manager. Used appropriately, this service can be a powerful tool in helping to meet the needs of disabled older adults."