If Utah had an Office of Consumer Health Care Advocacy, Hunter High School senior Rebekah Lohmeyer might not have had to wage a three-year battle to persuade her health-maintenance organization to pay for a new motorized wheelchair.
Lohmeyer, who has degenerative spinal muscular atrophy, had a wheelchair, but it didn't fit her properly. It was so large she was unable to ride public transportation, let alone go into all of the rooms of her family home.Worse yet, she could only partially motor the cumbersome wheelchair into the doorways of her school classrooms.
When she and her mother, Kathy, tried to appeal the HMO's decision, they learned the company had no grievance process. Kathy Lohmeyer eventually got the state Medicaid office involved.
The Lohmeyers eventually prevailed, but not without considerable heartache.
"It made me really mad," said Rebekah Lohmeyer, who plans to attend college upon graduation.
On Thursday, representatives of the Managed Care Improvement Project, a two-year study of consumer health and quality issues sponsored by the Utah Governor's Council for People with Disabilities, called on the Legislature to create such an advocacy vehicle.
"While people with disabilities are the canaries in the mines of our health-care system, we found that all health-care consumers need assistance to navigate the system in order to make it work right," said Catherine Chambless, the council's executive director.
Sen. Peter Knudson, R-Brigham City and Rep. Trish Beck, D-Sandy, will carry legislation to create the office within the state Department of Insurance.
The office would be composed of three full-time employees who would help educate, inform and advocate for consumers regarding their health-care rights and responsibilities.
Tina Johnson, a registered nurse who conducts classes for people recently diagnosed with multiple sclerosis, said some people need only to be steered in the right direction. Others require more extensive assistance.
"Many people who have disabilities or chronic health problems can't navigate the system," Johnson said.
The purpose of the Managed Care Improvement Project was to learn about managed health care and its impacts on people with disabilities.
The project included visits to seven managed care organizations: United HealthCare; American Family Care; Intermountain Health Care; Valley Mental Health; PacifiCare (now Altius Health Plans); Blue Cross/Blue Shield and University Health Network.
Project members conducted standardized surveys of each managed-care organization and recommended more consumer involvement in health-plan policy and quality issues.
The project has already borne fruit, in that project participant Ted Loosli, an officer in the Disabled Rights Action Committee, has been invited to participate on United HealthCare's grievance advisory committee.
"We'd like to challenge all the HMOs to do the same kind of thing," Loosli said.
The project's final report "If It's Done Right . . . " also recommended that managed-care organizations:
Strengthen parts of the health-care systems that are working well.
Promote regulations and policies that increase accessibility and choice for individuals with special health-care needs and ethnic minorities.
"There are 200,000 ethnics in the state of Utah. Those numbers will continue to increase. We, too, will get old. We, too, will acquire disabilities." said Ruben Jimenez, a retired US West personnel manager representing the Utah Coalition de La Raza.
"Consumers need to speak up and be involved with their care, but the system has a long way to go to accommodate persons of ethnic or cultural minorities and welcome practitioners of the same."
Jimenez said he was aware of one health-care setting that serves a largely Hispanic population. "When they needed a translator, they would find the janitor."