State officials are developing plans for Medicaid recipients to be cared for in “medical homes” beginning in January, but they might want to start with a marketing campaign: In focus groups conducted on behalf of the Department of Social Services, many people said they were unfamiliar with the concept–or worse.

Upon hearing the term “medical home,” some people said it sounded like a place you go to die, said Meryl Price, a consultant working with DSS to design the medical home program. Other participants said it sounded like an institution, a place where you go and don’t get out.

“That was a pretty intense finding,” Price said Wednesday during a meeting on the medical home plan.

The focus groups were meant to gather information from Medicaid recipients that would inform the design of the medical home program. Although participants were unfamiliar with medical homes, many of the problems they identified–a lack of coordination between primary care providers and specialists, long wait times for services, not being given test results, even when they ask–are things the medical home model aims to address.

Despite what the name might imply, a medical home is not a nursing home or institution; it’s not a physical location at all. Instead, it’s a way of running a medical practice in which the health care providers take a more active role in meeting patients’ needs. There’s no single definition, but the concept involves a medical practice serving as a patient’s regular source of care–hence the word “home”–and coordinating the care patients get from specialists. To ensure that patients can access care when they need it, many practices that serve as medical homes offer extended hours or give patients the option of communicating with providers by telephone or email.

The model is frequently called a patient centered medical home, but DSS is calling its program a person centered medical home in recognition of people with disabilities who are sensitive to the term “patient.” Although most health care providers in Connecticut currently don’t meet the medical home standards set by multiple accrediting groups, DSS hopes the model will become common enough that all Medicaid recipients will have access to a medical home within a few years.

The focus groups included people recruited by community organizations and DSS, and included a range of Medicaid clients–low-income adults, adolescents, people with disabilities, pregnant women, mothers of newborns, parents of children with special health care needs, and people with behavioral health needs.

Most participants reported that they had had a relationship with a primary care provider for more than a year, and that their doctor treated them like a “whole person,” not a patient or a disease.

But participants raised concerns about accessing specialists, care coordination and the way they get treated when they go to the doctor.

People in the focus groups said their health care providers should be more proactive in ensuring that they get all the information they need, and said they need more help identifying specialists that accept Medicaid and in arranging transportation to get there. Many also reported coordination problems between their primary care provider and specialists, with gaps including being asked to repeat information, having trouble getting their medical records, being asked for details about their medical conditions that might not be clear to people who are not health care professionals, and variation in treatment between providers.

Many participants also described less-than-ideal experiences visiting their doctors. Medicaid clients believe that the front desk staff at their doctors’ offices are rude, and attribute it to discrimination, Price said.

“People perceived the problem as more with the front desk staff and not the doctors and the rest of the staff,” she said.

Participants were also bothered by doctors interrupting them or leaving the room, and by front desk staff dismissing their concerns. “I think that happens to everybody everywhere,” Price added.

Many focus group participants said they felt they had faced discrimination because they are covered by public insurance, getting rude and disrespectful treatment from staff and poorer treatment from their doctors.

Price noted that one participant, referring to the state-run Charter Oak Health Plan, said, “When they find out you have Charter Oak or whatever, your appointment is six months out.”

Participants also reported that they felt they were discriminated against or had received poor treatment from office staff because of their socioeconomic status or their race. Participants with behavioral health needs reported discrimination or poor treatment and said providers dismissed their opinions or concerns after learning about their psychiatric disability.

Price made several recommendations based on the finding, pointing to the need for practices to increase efficiency and the desire among participants to do business with their doctors by phone. Patients also need better access to specialty care and to appointments on short notice.

She noted that DSS is embarking on a major project with the Connecticut Health Foundation to address health disparities, and suggested looking for ways to improve communication between patients and providers, including sensitivity training for providers and office staff, and making sure providers explain things in layman’s terms.

Price also pointed to the need to make sure that consumers are educated about what a medical home is, and to use the term consistently. She noted that some focus group participants have children with special health care needs whose care is delivered in medical home practices, but even they were not familiar with the term. Price asked what they thought of their medical home and they replied, “What’s that?”

Alicia Woodsby, public policy director of the National Alliance on Mental Illness, Connecticut, said she was struck by the responses. She said it hadn’t occurred to her that people would think medical homes were institutions, but that it made sense, particularly for people with disabilities. It’s important to work on the marketing of the concept, she said.

“People might not think this is a great thing if we don’t work on that,” she said.