For dozens of women in Pima County, Sarah Lee is like a fairy godmother.
She fields their texts and calls every day, soothing their worries about their babies, their bodies, their progress as parents.
Lee is a community health worker for Health Start, a statewide program that connects expecting mothers and their babies with a trained public health coach who finds them resources, provides information about their child’s development and serves as a sounding board for their questions.
Community health workers live and work in the same communities as the women in the program. They are trained on child development and pregnancy, but in this case, they work outside a traditional medical setting. They operate more like a well-trained friend who can address concerns and provide current information about what a mother or child could be experiencing.
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For Health Start, the community health worker model serves as a less intimidating and nonjudgmental access point for prenatal and postnatal help for moms with risk factors that can complicate pregnancy and birth. They keep mothers on track with prenatal care, helping them have a healthy birth, and then stick around for up to two years after a baby is born, helping the new parent adjust.
Arizona’s Health Start program, to put it simply, works. A recent study of the program showed it improved birth weights and immunization rates for children. Women in the program attended prenatal care appointments at higher rates.
But the program is relatively unknown — it sometimes struggles to find participants. And while it receives a steady amount of state funding, the program can’t grow much beyond the 2,800 parents it serves each year, a tiny proportion of the babies born in Arizona annually.
Still, if more studies show the effectiveness of Health Start, it could become a national model for community health workers helping mothers before birth and for the two years after. Arizona officials in charge of the program want the idea to spread to other states.
to a friend
Women are eligible for the program if they have one or more risk factors, which include both social and medical issues, such as marital status, living situation, race and ethnicity, education level, income, insurance type, previous complications during pregnancy and maternal age. In Pima County, Health Start also works with refugees and women in jail.
The program is based on the promotoras model, a grassroots movement that began in the 1960s in Latin America. Peer-education programs were created to train women in various health themes in rural areas. The program came to the United States through the U.S. Federal Migrant Health Act of 1962 and the Economic Opportunity Act of 1964. A promotora is a community member with insight into local health and social issues who passes that knowledge onto others in the hope of promoting healthy living in the community.
Someone with a stack of degrees might intimidate a patient who has questions about her pregnancy or her child, especially if that patient isn’t fluent in English or is new to the language. But a regular person who lives in the community with some specific training on pregnancy and early childhood can spend more time, in a less formal setting, to answer questions and provide resources.
Parents who go through Health Start become more confident at advocating for themselves and their children. They learn how to find and assess information to understand their children’s development and help them grow.
For Maricela Reiber, mom to 18-month-old Emiliana, having a community health worker to talk to helps her stay up to date on information and feedback about her daughter’s milestones and the changes she’s going through. She’s never been a mom before. She turned to Facebook groups at first and relatives whose methods seemed outdated.
Now, she gets worksheets from community health worker Lee, detailing what she should see her daughter do and how to react. The most recent one talked about behaviors her baby might do, like biting or throwing herself on the floor, and what those could mean.
Instead of being frustrated by those kinds of outbursts, the training showed her how to help her daughter through those situations by asking her to express her emotions as words.
But beyond the information itself, Reiber gets reassurance — that her feelings are normal, that she’s doing her best, that there are people out there to help her when she needs someone to learn from. And that reassurance has helped her grow more confident as a mother.
“Sarah Lee's always very supportive and encouraging and motivating,” Reiber said. “And she's constantly offering that reassurance of, 'you're OK, you're doing a wonderful job, she's a happy little kid, she's taken care of.' And just having that validation has been great.”
Kerri Reeves and her newborn son, Oliver, both nearly died during Oliver’s premature birth. And after the 38-year-old’s pregnancy, she experienced pain beyond what she had after the first time she gave birth. She, too, turned to Lee.
Lee taught Reeves, who works as a social worker in oncology, how to better advocate for herself with her doctors. She answered questions about formulas and feeding issues.
Without Lee’s guidance, Reeves would have had to spend countless nights doing her own new mother research online, an overwhelming prospect for a mother of several young children.
Reeves first started receiving services from Health Start two years ago, before her daughter Charlotte was born. Charlotte was advanced, easily surpassed expectations and needed more stimulation. Oliver, who was premature, fell behind in some areas.
Lee helped with both, and will be able to provide services until Oliver is 2 years old.
“It feels like you're talking to a friend, but a friend with a lot of knowledge, confidentially,” Reeves said. “I can tell her things that I would never dream of telling my doctor or that I would never utter out loud to a friend, and she gives you that encouragement to take action with that.”
Researchers at the Arizona Department of Health Services, the University of Arizona and Northern Arizona University evaluated 10 years of the program and its impacts on mothers and children. Their study, released in December, concluded that Health Start is an innovation that can produce healthier babies and mothers in diverse populations across the state.
The study, which analyzed more than 7,000 participants against control groups, showed that families in the program had lower instances of low birth weights and preterm births. Women in the program attended prenatal care appointments at higher rates. Children in the program had higher immunization rates. All of these factors improve outcomes for these families.
The program also saves the state money in the long term, the study concluded, as around 80% of the families in the program are on the Arizona Health Care Cost Containment System. Better preventative care means less cost to the state down the road.
The authors lauded the program’s success and recommended that community health worker services be better integrated into clinical settings as well. The authors also said more visits, better transportation and education on additional topics could strengthen Health Start.
So far, two studies have shown the program’s successes. The state needs two or three more studies before it can be considered “evidence-based” by the U.S. Department of Health and Human Services, said Sara Rumann, the Health Start program manager at the Arizona Department of Health Services.
“If we were to be considered and deemed evidence-based by DHHS, we would be a model that other states could replicate and draw down the federal money, and use this particular Health Start model and put it in Nevada, for example, or New Mexico, for example,” Rumann said.
Before the pandemic, many of the Health Start visits between the community health workers and families happened in person. Now, there’s a flurry of texts, emails, phone calls and Zoom sessions to facilitate these meetings, though some are again returning to face-to-face.
To prepare for their monthly visits with clients, community health workers review the Health Start curriculum, choosing the appropriate topics to discuss. The curriculum includes information about safe sleeping for infants, a program called “All Babies Cry,” car seat safety, oral health and more.
But they don’t just refer to Health Start’s built-in curriculum. Lee and other workers also pull supplemental materials and resources to make sure they have as much information as possible for their clients.
Community health workers also refer to Health Start’s Healthy at Home checklist, which they complete with clients when their children are about 5 months old, and then again between 18 and 24 months.
The checklist includes tips to keep babies and toddlers safe in the home while also addressing ways to keep adults safe and healthy, too, including simple checks like having smoke detectors in the home.
“As with all of our visits and curriculum, Healthy at Home is completed in a nonjudgmental way and offered as a tool,” Lee said. “It’s ultimately up to the caregiver to decide what’s best for their own household.”
Health Start screens new mothers for perinatal mood disorders, including anxiety and depression that can begin at conception and continue past delivery. Data shows these types of mood disorders can affect as many as 20% of women and are more common than gestational diabetes.
They screen for developmental delays in children, and while they can’t make diagnoses, they can point out areas in which a child might benefit from some extra practice or help.
“Parents seem to really enjoy those. They get to show off the great things their baby has learned, and they get to see that the funny thing their baby is doing is actually a developmental skill,” Lee said.
Community health workers also can be the first to flag signs of domestic abuse, and they are trained to talk to patients about what it is and looks like.
They educate families about the health-care system, particularly if they’re new to the country, and consult monthly with a nurse practitioner or physician and early childhood and mental health specialists to review client concerns.
“A huge piece of this is connecting families with resources,” Lee said.
Health Start began in Pima County in 1984 as a program administered by the University of Arizona College of Medicine’s Rural Health Office. The program, “Un Comienzo Sano/A Healthy Beginning,” was created to address a steady increase in the rate of women who were receiving inadequate or no prenatal care.
At the time, Arizona was ranked 45th lowest in the nation for the number of women receiving adequate prenatal care.
In 1994, the state Legislature passed the Arizona Children and Families Stability Act, formalizing and expanding Health Start. The program was initially funded through the state general funds and later through the Tobacco Litigation Settlement Fund. Since 2004, it’s been funded by Healthy Arizona Initiative lottery money.
The current model is effective, but like anything else, it’s not perfect, Rumann, of ADHS, said. The program can’t really grow, since it receives about the same amount of funding every year. And it struggles to reach some rural communities simply because of the increased travel and cost of providing services.
“That limits our growth and capacity really in different areas of the state,” Rumann said. “Coconino is my main area right now that’s having struggles. We have a lot of families that need help in Page. When you get outside of Flagstaff, there’s lots of families out there, but not much to draw on.”
Transportation serves as an obstacle for many families that Rumann wishes Health Start could help address statewide. Pima County provides bus cards to their families to use to get to prenatal or pediatrician visits, but the program itself doesn’t have enough funding to offer transportation options to families enrolled in the program in other counties.
Lee, who works for the Pima County Health Department as a Health Start program specialist, said the program has changed over the years to meet the needs of the community, including the addition of services to the jail, which went into effect about five years ago.
The county also got permission to work with families who have children in Department of Child Safety custody, and Lee is particularly proud of the county’s work with refugee populations.
Health Start consistently has used the same type of curriculum, but health workers can tailor it to meet each person’s individual needs or the needs of a specific community, Lee said.
“Community health workers are basically peers for people,” Lee said. “They live in the community they’re working in, they may have lived experience and maybe have been on (Special Supplemental Nutrition Program for Women, Infants and Children) or (Arizona Health Care Cost Containment System, the state’s Medicaid system). We understand what our clients are going through, to some extent.”
While Lee has a bachelor’s degree in family studies and human development, community health workers aren’t required to have a college degree.
Lee — one of two community health workers serving Pima County — has a caseload of about 50 clients. The county is currently looking for a third health worker to add to the team, but even with only two, there isn’t a waitlist to get into the program.
Families enroll in the program through referrals from various community resources, including doctors, social workers and the International Rescue Committee.
If someone seems like a good fit for the program or expresses interest in signing up, they’ll be referred to the program and someone from Health Start will reach out. Interested families can also contact Pima County Health Start on their own to get started.
Community health workers also do their own outreach to find more families. In March, Lee and others spent the morning at Tucson Medical Center’s Be Safe Saturday, trying to get the word out about the program.
Lee said she’s seen in many of her clients the progress they’ve made in their confidence and parenting skills after a short time with the program.
“We are super lucky to get to do what we’re able to do,” Lee said. “I think it’s a great model and I love that it’s a peer that’s working with families. I think that makes people feel a little more comfortable.”
For Reeves, that self-advocacy, learned through Lee’s help, was invaluable. It led to a diagnosis of and surgery to treat placenta accreta, after she brought it up with her doctor following discussions with Lee about the pain she experienced.
“I don't think I would have advocated for my own health as strongly as I did prior to surgery without Sarah Lee,” Reeves said. “So it's not just for the kids, it’s for the moms or dads as well.”
In six months, once Reiber’s daughter Emiliana is 2, she’ll age out of Health Start’s services. But she feels prepared for what comes next.
She now knows how to access services and find information that she may need to help herself or her daughter. Emiliana will be talking more and better able to communicate what she needs.
Reiber felt the program was so useful, she referred her best friend to Lee, too. If she has another child, she would definitely use Health Start again. And she’s been telling everyone how much she’s learned.
“When I was telling my mom and family about it, they were like, 'I wish that we had that when you were a baby,'” Reiber said.