Helping Disadvantaged Families Guide Their Children to Great Health
During her residency in New York City, Susmita Pati, a pediatrician, was frequently bothered when she saw disadvantaged families struggling with non-medical barriers to health. If a parent hadn’t renewed their Medicaid plan, for example, the family might be turned away at the doctor’s office. Pati recalled:
It might have been that the family did not receive renewal instructions or that they could not understand the instructions or they were missing required documentation. It troubled me a great deal. These families had taken time away from work, picked up their kids at school, and shown up for their appointments. And Medicaid exists for them. It all made no sense to me. I became very interested in becoming an advocate for changes to the system.
She was particularly attuned to the struggles newcomers to America faced. Her parents had immigrated from India, and she knew immigrants, even those who speak English, frequently contended with language barriers that compounded the confusion families face in navigating the U.S. health-care system. The consequences extended well beyond frustration, aggravation, and inconvenience to poor health, elevated health risks, and avoidable acute care episodes for the children.
Pati complemented her MD with an MPH, and she held as a foundational principle that a population’s health has far more to do with social factors, such as poverty and housing, than anything that happens in hospitals and clinics. For about 15 years at academic health centers in New York and Philadelphia, she combined her work as a pediatrician with health system research that focused on the social determinants of health.
In 2010, she accepted a position at Stony Brook Children’s Hospital on Long Island. The institution was eager to support her aspiration to develop a program that would address the problems she had been interested in for years and had a grant to do so. Pati went on to launch and lead a program focused on helping families that struggle with various social barriers to their children’s health.
By 2016, the Keeping Families Healthy program employed a small team of six community health workers (CHWs) plus a full-time supervisor. The CHWs visited families in their homes. Their job was to provide families with the assistance they needed to become self-sufficient in accessing the health system and attending to their children’s medical needs. This typically was achieved through about 4–5 visits over a period of 4–5 months.
At launch, Pati set up a data system that enabled her to rigorously assess the program’s effectiveness. She found that not only were the children healthier, the program generated savings to the health system that were far greater than the program’s cost.
Here is a scene familiar to many upper- and middle-class families across the country. Both parents work. Both are in the middle of a high-pressure week. Their 5-year-old son has suddenly developed a high fever. He cannot go to school tomorrow and probably should be seen by a doctor. Which parent is going to stay home? Who will handle making the appointment and transportation? Who will pick up any necessary medicine and notify the school?
Let’s raise the blood pressure a bit more. There is only one parent—the mother. Despite juggling two part-time jobs, she earns only a poverty-level income. She fears she will be fired if she misses work unexpectedly. The physician’s office is difficult to get to. The health insurance situation is unclear to her. And while the mother’s English is good enough to get by at work, communicating in a hospital or at a doctor’s office is much harder. (Imagine yourself or a loved one who is not a health professional alone in an emergency room in a country where nobody speaks English.)
Now imagine in our original scenario that the child’s health situation is not a single episode, such as a fever, but something more chronic. Maybe the child has asthma, for example, and is sensitive enough that unanticipated emergency room visits have become a regular occurrence. How do you think this mother would feel? It seems likely that such a parent, especially one who is committed, loving, and hard working, might feel like a failure in the face of an elemental parental responsibility—attending to her child’s health needs.
Although the problem appears daunting, the fundamental premise of Pati’s Keeping Families Healthy program is that for most such families just a little bit of help can have an enormous impact. Indeed, the majority of these parents want to feel confident in their ability to take care of themselves and their children. They simply need a knowledgeable friend to show them the way.
Pati was able to launch Keeping Families Healthy quickly. The funding was in place when she arrived at Stony Brook.
Furthermore, the hospital had a partnership with Federation of Organizations, a multiservice community-based social welfare agency. The agency had a long history of employing community health workers and deploying them to provide care, particularly mental health services, for seniors. Federation of Organizations had recruiting processes and an infrastructure in place that enabled efficient safety checks, background checks, and so forth. With an outline of the services she wanted to provide for families, Pati revised the agency’s existing CHW job descriptions with a focus on the particular needs of disadvantaged families with small children. She recalled:
Honestly, it was not too hard. We had to make children the focus and include supporting the family members or caregivers. They are the ones who the children are dependent on. We knew we had to deal with the entire family. That’s why we named the program Keeping Families Healthy. We also knew that we had think beyond the home and recognize the vulnerabilities in the child’s full living environment—family, home, school, and neighborhood.
CHWs also needed to be able to learn at least some disease-specific knowledge, about what you might expect a well-informed neighbor to share.
Pati had experience with hiring community-based research staff in past jobs and was comfortable applying these skills to hiring community health workers. She knew CHWs needed a certain type of personality to do their job well—a balance of empathy and firm guidance to help families move in the right direction. Within a few months, she had hired several CHWs and launched the program in a single Stony Brook clinic. The physicians in the clinic referred families to the program, and a CHW soon visited the families in their homes.
These CHWs spent their time getting to know the families and their children, their health needs, and their health risks. They often helped families figure out simple techniques for keeping track of medications, symptoms, and appointments. They might create an asthma binder, for example, that included an asthma action plan on what to do and who to call in response to various symptoms. They also helped families gain confidence in calling and expressing concerns to doctors, asking for interpreters when needed, acquiring transportation vouchers, and dealing with insurance. The CHWs shared information with physicians and school nurses to help coordinate care.
The program took on new patients with an expectation of providing only temporary assistance—a few visits over a period of a few months—after which the family would be self-sufficient. This goal was met about three-fourths of the time. Of the remaining quarter, some families simply needed a few more visits.
Other families faced medical challenges, social challenges, or both that were beyond what the program could address. For example, the program served one family in which there was a child with spina bifida who had suffered through several surgeries by the age of 10. In addition, the mother had ongoing housing problems and had suffered domestic abuse. It was a case that was simply beyond the program’s capability. In such situations, Pati removes families from the program and tries to find alternatives that can offer more intensive assistance.
Once the program was operational, Pati engaged in a process of continuous improvement, developing and documenting specific protocols for home visits, for example.
From the program’s initiation, she trained CHWs to collect information she could use later to formally assess the program’s effectiveness. The protocols for home visits included structured data gathering that followed standard research conventions, and the CHWs carried technology for recording the data. (Families had to give permission to be included in the research.) According to Pati, the CHWs did not feel the data gathering was a distraction, as the information they were gathering was helpful to them in doing their jobs. Pati also secured an agreement with the New York State Department of Health to obtain ER and hospital utilization data from their statewide information system.
Over time, Pati developed a training program for new CHWs as well as a training manual more than 100 pages in length. The training included wide-ranging information, such as techniques for motivational interviewing, HIPAA compliance, health technology, and modules that helped CHWs understand the particular challenges they would be assisting families with, such as learning to care for a newborn.
Pati believed field training was even more important than written guidance. New hires shadowed experienced CHWs on home visits for a couple of weeks. Even after new hires began conducting home visits alone, a supervisor occasionally went along for ongoing training and assistance.
In 2014, Pati hired a full-time program supervisor, Giuseppina Caravella, who had an MPH degree and experience in pediatrics, to help guide and strengthen the program. Caravella met with all CHWs every two weeks to review their caseloads and to troubleshoot. She also reviewed all the data generated by the CHWs and edited their reports before forwarding the reports to the families’ physicians. By 2016, the program employed six CHWs, all but two of whom worked part-time. On a full-time basis, a CHW could carry a caseload of about 40 patients.
Pati reports that the CHWs are highly satisfied and she expects some to stay with the program for years to come. It is a point of pride for her that the few who have left the program have done so to take on health-care roles of greater responsibility.
The Keeping Families Healthy program is not expensive. CHWs are paid $15 per hour. They must provide their own car for making home visits, but they are reimbursed for gasoline and travel. Some ballpark math demonstrates that the price of the intervention—4–5 visits over 4–5 months—is well under $1,000 and probably is closer to $500.
According to Pati’s data and ongoing research, the program delivers much greater savings. The largest chunk of savings comes through a 50 percent reduction in the ER visits. (She indicates that her statistical analysis eliminates any possibility that this reduction is simply reversion to the mean.) Ballpark math is accurate enough to show that this translates to a multiple of the amount spent on the program. Pati also has demonstrated a significant improvement in vaccination rates, which are known to be long-term predictors of health costs and outcomes. (See Susmita Pati et al, “An enriched medical home intervention using community healthworkers improves adherence to immunization schedules,” Vaccine, Vol 33 (2015): 6257-6233.)
She would love to see the expansion of her program and similar programs around the country. So far, however, she has relied on a series of grants to keep her program alive. Nothing could be more catalytic to growth than the expansion of alternative payment models. Pati is hopeful that the Centers for Medicare & Medicaid Services (CMS) will be able to achieve its aggressive payment reform goals.
In her experience, though value-based payments are desirable, as a practical matter it is enormously challenging for institutions, both payers and providers, to make the transition. This requires tremendous investments in cost and quality data-gathering infrastructure. Further complicating matters is the reality that both types of institutions need to transition at roughly the same pace. Pati knows many senior leaders, including state commissioners of health and a director at CMS, and is empathetic with the barriers that they face.
A simpler possibility is paying for CHW visits on a fee-for-service schedule. This is a model that exists in a few places around the country, though not at rates that cover the full cost.
While Pati is gathering evidence that demonstrates her program both improves outcomes and lowers costs, she doesn’t believe that quantitative proof of effectiveness will necessarily open the doors for greater funding. She believes she faces resistance that is more emotional than intellectual. In her experience, some people seem to believe at a fundamental level that they should not have to worry about the problems of the poor. She elaborated:
We can change minds with data but we can’t change hearts. I hope we soon will reach a threshold at which enough people just believe caring for the poor is the right thing to do, the way we recently reached a tipping point with gay marriage. But I just don’t think we are there yet.
While there are many families that the Keeping Families Healthy program has served, Pati particularly enjoys telling the story of a 7-year-old girl with asthma, one who had been recently hospitalized and had multiple prior ER visits, and whose mother had never learned to read or write. The CHW’s intervention was decidedly low-tech, but the impact was enormous. Pati remembers her pulmonologist colleague’s description of the young girl during an asthma check-up. She carried a small drawstring bag that contained her medications, her binder, and her careful records of when she took her medications and the symptoms she experienced. Her mother had effectively used color-coded cards created by the CHW to request medication refills at the pharmacy when she ran out.
The girl’s symptoms improved. She avoided the ER. And when the CHW showed up at her house one day, she found the little girl wearing her best dress, asthma kit in hand, eagerly asking the CHW to pose with her for a picture.