When Guissela Mariluz calls every day, Luciana Joaquin remembers to take her pills for diabetes, anxiety and paranoia. When Mariluz doesn’t call and Jaoquin forgets to take her medication, she hears voices inside her head, reacts, and gets in trouble.
Like the time last year when Joaquin heard a threat: People were coming to invade the building, owned by the Boston Housing Authority, where Joaquin rents a one-bedroom apartment. Joaquin rushed into the hall to alert her neighbors.
“She started knocking on everyone’s doors, at 3 or 4 in the morning, so everyone could get out,” Mariluz recounted. “She was throwing things from her building down the stairs, things you can’t do in housing, but in her head she was doing it because she wanted to help.”
Joaquin’s misguided warnings almost got the generally demure, middle-aged native of the Dominican Republic evicted.
But Mariluz intervened, in her role as a community health worker. She’s one of at least 3,600 men and women in Massachusetts who help patients pay bills, arrange pet or child care so the patient can have surgery, or sit with them at an AA meeting. It’s a job that’s been taking shape for decades but is just now becoming a more formal profession. Massachusetts is finalizing rules that are expected to establish the first voluntary community health certification.
Mariluz is in a newly created position at Rosie’s Place, where the focus for decades has been on helping women find stable jobs and housing. The idea for her job took shape a few years ago when Rosie’s Place director Sue Marsh realized that about 20 percent of her clients were losing their housing, even though they could pay rent and utility bills.
“Their housing was relatively under control; what wasn’t under control was their health problems,” Marsh said.
A woman with diabetes who passed out when her blood sugar got too high might be sent to a nursing home and then be back on the streets. Women like Joaquin, with untreated mental health, bothered other tenants. So Marsh hired Mariluz and asked her to figure out what it would take to help about 20 women get control of their health.
Her first step: “to build trust,” said Mariluz. Then she established a routine with each woman: daily calls, restocking refrigerators, pills sorted into boxes marked “morning” and “night” each day, ad hoc exercise and addiction counseling, trips to the pharmacy or clinic or hospital.
Mariluz became the mom or grown son or sister that Joaquin and many women at Rosie’s Place do not have.
“They don’t have the daughter who goes with them to the doctor’s appointment and then hounds the home health agency to do what they’re supposed to do, or who reminds the doctor that the guest has an allergy to something,” Marsh said. “It’s running interference for somebody who has health problems and lacks that person in their lives to serve that need.”
Community health workers are running interference for all kinds of patients in all kinds of social service and health care settings. The job title covers more than 50 positions, including health care coaches, patient navigators and peer counselors.
Caitlin Allen, a research assistant at Emory University in Atlanta, surveyed community health workers across the country in 2014, four years after the Affordable Care Act “created a watershed moment” for the profession. She found that many doctors and nurses see the need for someone who can monitor or track patients between appointments.
“Community health workers can really become that bridge between the community and clinic that I think a lot of providers have been looking for for a long time,” Allen said.
But beyond the bridge, Allen said it often isn’t clear who the community health worker reports to, how much authority they have, or even just what they’re supposed to do.
Mara Laderman, a senior research associate at the Institute for Healthcare Improvement in Cambridge, said clinics and agencies that want to hire a community health worker must be prepared to define that role and train the new employee for a specific set of tasks.
“Organizations, both health care and community-based, that are thinking about bringing in a community health worker should not rely on them to serve as a one-size-fits-all solution to a heterogeneous set of problems,” Laderman said.
There are no national standards for community health workers and no required training or certification. The Massachusetts Department of Public Health is finalizing regulations for voluntary certification that would include 80 hours of training in 10 core areas.
Lissette Blondet, director of the Massachusetts Association of Community Health Workers, started crafting requirements for this field 25 years ago. In that quarter century, Blondet says one thing has not changed: Her members are in the job to give back.
“Many of them have walked the shoes of their clients, because of poverty or because they share the health issue, they understand the barriers, obstacles and issues that their clients are facing,” Blondet said, “so they can coach them in very pragmatic ways.”
Blondet says these workers, who often start at $12 an hour, save the health care system much more than they are paid. Preliminary results from a demonstration project, using community health workers to help children manage asthma in New England, show fewer hospital admissions and emergency room visits with savings of $1,104 per patient in one year.
Most community health workers are paid through short-term grants and change jobs frequently.
That’s not the plan for Mariluz, who is full time at Rosie’s Place. Joaquin and other women have become so dependent on Mariluz that when she takes time off, they fall apart.
“This is the product of me being out,” Mariluz said while walking down a hallway inside Boston Medical Center, flipping through Joaquin’s medical chart. Her blood sugar had been dangerously high recent mornings. Joaquin had stopped taking her pills at night.
When Joaquin’s sugar is high, she gets massive headaches and a racing heart. “The other day something happened in my heart, it was beating a lot,” Joaquin said in Spanish, patting her chest and sitting on an exam table in the officer of her endocrinologist, Dr. Devin Steenkamp.
The racing heart could also be a symptom of dehydration, Dr. Steenkamp told Joaquin. He was concerned and went over a new plan to get Joaquin’s blood sugar back into a stable, safe range.
“You can do it,” Steenkamp said to Joaquin, as Mariluz translated. “You have before.”
Joaquin nodded, a shy smile lights her face.
As long as she can keep her family, Joaquin said. All she has is Mariluz and Rosie’s Place.
“They’ve given me a lot of help and that’s been my saving grace because I don’t have any other help,” she said.