When Hervey Luster lost his disability benefits from the Social Security Administration earlier this year, his health problems worsened. The 59-year-old Berkeley resident suffers from congestive heart failure and high blood pressure — and the stress of losing his benefits took a further toll on him. “I don’t know how I am going to pay rent, how I’m going to eat,” he said.
Luster’s needs, in short, extend far beyond his medical issues. And in many ways, his current financial challenges and the difficulties he’s had navigating the federal bureaucracy are intertwined with his health woes. “They’re saying I can work while my doctor is saying I can’t,” he said of social security representatives.
Since this spring, however, Luster has been receiving extra help at Oakland’s Highland Hospital, the largest campus of the Alameda Health System. As a participant in the new Highland Health Advocates program, he has been working with volunteers stationed at a “help desk” inside the lobby of the hospital’s busy emergency room. Since March, these so-called “navigators” have been working one-on-one with patients on larger obstacles — such as access to food, housing, and health insurance — that overwhelmed doctors and social workers don’t have time to address.
The initiative is part of a new Bay Area trend involving several health institutions that are hoping to shift the way hospitals and clinics deliver care to the urban poor — by proactively tackling social needs in medical settings. Children’s Hospital Oakland launched two pilot programs earlier this year and is pushing forward this month with full-time help desks in both its primary care clinic and emergency room. A group of doctors, social workers, lawyers, and officials affiliated with Children’s Hospital, Highland, San Francisco General Hospital, and several government agencies and academic institutions make up the Bay Area Regional Help Desk Consortium, which is dedicated to implementing this kind of social support within health-care settings.
The overarching concept is based on the simple logic that primarily treating the symptoms of disease is inadequate and does little to keep patients from returning to the hospital with the same or worse health problems. “The way we are practicing medicine doesn’t address any of the social and environmental issues that patients have,” said Dayna Long, a Children’s Hospital staff pediatrician and co-director of the Family Information and Navigation Desk (FIND) program. “You really need to start upstream. … We need to start thinking about poverty as a vital sign.”
Although it’s widely accepted that social determinants, like stable housing (or lack thereof) directly impact health outcomes, there are few health-care services that target these factors. That’s often due to staffing limits, lack of awareness of available resources, and poor technological capacity for cross-agency communication.
Health Leads, a Boston-based nonprofit organization founded in 1996 and modeled on the philosophy that basic resource needs should be a standard part of care, has brought social welfare advocates into medical institutions on the East Coast. There are also established “medical legal partnerships” around the country that have integrated legal services into hospital facilities. The Bay Area consortium, however, is the first of its kind west of the Mississippi River and is led by staff from participating institutions. Under the program, volunteer navigators handle basic needs — like helping patients fill out housing applications or directing them to food pantries or emergency shelter. And in cases in which patients have more serious needs, the navigators or medical staff directs the patients toward licensed social workers and qualified attorneys.
The participating Bay Area hospitals have been working on the project since early 2012, securing funding from several sources. Children’s Hospital, through an Oakland-based organization called the Regional Asthma Management and Prevention (RAMP) program, received $185,000 in federal funds from the Centers for Disease Control and Prevention. That seed money helped launched pilot help desks involving about three hundred patients. Through a collaboration with UC San Francisco, Children’s also received an initial $150,000 grant from the Lisa and John Pritzker Family Fund, which has committed two additional years of funding to both Children’s and San Francisco General Hospital. Highland has not yet relied on funding outside of its established budget, but the hospital plans to bring on a coordinator in 2014 with financial support from Alameda County Health Care Services.
In the emergency room at Children’s Hospital, which launched its first formal help desk last month, navigators communicate with nurses and seek patients they can approach. They then have interested families fill out short surveys through which they identify their top needs. From there, navigators take steps to help patients prioritize and address these challenges. The emergency department help desk operates seven days a week, with four to six navigators a day, each working with three or four families.
Two weeks ago, Alicia Ruelas, a 31-year-old Hayward resident, showed up with three of her children — the youngest of whom was not feeling well. She told the two navigators on site that she is currently living in a one-bedroom apartment, where her four children — ages five, six, eight, and fourteen — are all crammed into one room, while she sleeps in the living room. Ruelas is trying to find somewhere else to live, but has not had a lot of luck and has little time to devote to the seemingly impossible process.
“The average minimum-wage person cannot afford to live in the Bay Area anymore,” she said, as two navigators worked to schedule an appointment for her with the Alameda County Housing Authority. “It’s outrageously expensive. My kids are fed up and I don’t blame them.”
Ruelas, who receives food stamps, also does not currently have health insurance — and, like many people across the country, has had trouble signing up online for the Affordable Care Act, also known as Obamacare. The navigators helped her with her Obamacare application while she waited for information from the doctor.
Jose Rubio, a forty-year-old Berkeley resident who last month brought his five-month-old daughter to Children’s primary care clinic, where he was first introduced to FIND, said that it can be challenging to even ask for help. “It’s hard to be assertive,” he said. “You don’t have the confidence to speak up or sometimes you’re embarrassed.” But the clinic, he added, is a good place to talk through personal problems — confidentially.
Those problems can be multi-faceted and, at times, seemingly unsolvable. In another room in primary care on the same day, 33-year-old Niama Bagaga, who lives near Lake Merritt, explained that her landlord is trying to evict her family — from a home that has a serious mold problem that has greatly contributed to her two children’s asthma for years. “We cannot stay outside and I’m worried about the shelters,” the mother of an eight-year-old boy and three-year-old girl said, noting that she is currently fighting her landlord in court. “Both of my kids are sick.”
It is cases like these that can be especially difficult for physicians who may not have the time or information to help. “I see doctors and social workers get burnt out,” said Joey Crottogini, a medical case manager at Children’s Hospital. “It gets emotional.” He cited the “vicarious trauma” that some medical practioners suffer when they provide care for families with immense challenges. “I can’t tell you how many times doctors and residents will call me up … not knowing what to do, saying, ‘Someone just told me they’re homeless.’ They’re doctors and they are there to address medical issues and health issues.”
At Highland, there is one social worker on call 24 hours a day, 7 days a week, who may see 12 to 15 patients on a single shift, and is typically working with those suffering from intense trauma, explained Gloria Jenkins, director of social services and the program manager of Highland Health Advocates. “Our goal is really to relieve those social workers.” Often, she said, patients “are hurting emotionally and physically, usually both, and I think that it is very difficult for an emergency room to address.”
Dennis Hsieh, an emergency room doctor overseeing the help desk at Highland, also pointed out that social determinants of health are not emphasized in medical school. “Doctors are often afraid or don’t ask about these important issues, because even if they do come up, it’s like, ‘Oh, there’s nothing we can do for them,'” he said. “We feel badly about that.”
In its training curriculum, the consortium cites one national survey showing that four out of five physicians say unmet social needs directly lead to poorer health — and most are not confident in their capacity to address these needs. For some patients, trained college students can help fill in the gap. Combined, the new Bay Area help desks now have nearly 120 trained volunteers beginning to work with patients.
The help desks are housed in institutions in which most patients need social services. Children’s Hospital is a federally qualified health center that works with mostly low-income patients. About 90 percent of its primary care patients are “government sponsored,” primarily on Medi-Cal, the state welfare program, and in 2012, nearly 70 percent of emergency department cases were government sponsored. At Alameda Health Systems, about 45 percent of patients are on Medi-Cal; 25 percent are on HealthPAC, the county program for the uninsured; and about 14 percent are on Medicare.
Several local studies also illustrate clear links between poverty and health. A 2010 Alameda County report examining the public health impacts of the foreclosure crisis, for example, showed that about four in ten residents experiencing foreclosure had limited spending on food and household utilities — with more than three in ten foregoing medical care. The significant disparities in asthma hospitalization rates in the county are also well documented.
“Health-care costs are rising, and we are increasingly recognizing that addressing only the downstream medical needs is not a successful model and not an economically viable model,” said Laura Gottlieb, who is spearheading the consortium and is a family doctor with the Center for Health and Community and the Department of Family and Community Medicine at UCSF. “My thirty-year view is that health care settings will be an important … member of the teams that are helping to address social and behavioral risks for safety-net populations.”
From a systems perspective, investments in these services could translate to savings, Hsieh said. He noted that efforts like the help desk are becoming more relevant “as the focus turns to, ‘how do we save money in health care?’ as opposed to ‘how do we get people coverage?'” As Obamacare moves forward, it is expected that more of these needier patients will be seeking care from the participating hospitals.
“People are actually going to have access to health care,” Long said. “With the influx of new patients, it can’t just be business as usual.”
The increased volume is also likely to exacerbate one of the toughest challenges for volunteers — talking to patients who they just can’t help.
“I ran into a lot of obstacles and very complicated problems where I felt like I couldn’t do anything,” Highland volunteer Steve Lee told coordinators at a recent consortium meeting, reflecting on the hospital’s pilot. “What I started to realize is it doesn’t work for everyone, but for some people, I can truly make a difference in their lives and that’s what kept me going.”
JiaLing Chu, a 63-year-old Fremont resident and Highland patient, said that, at the very least, it’s comforting to have the advocates there every time she visits. “They are doing the best they can for you. And if they can’t help, they refer me to the people they think can,” she said. “I just feel like they are my guardian angels.”
If you’re interested in learning more about the program, email Dayna Long at Children’s Hospital Oakland at [email protected]. And for more information on the Highland Health Advocates program, call 510- 437-4688.