UofSC institute works to help vulnerable familiies

Good policy is informed by evidence-based research. At the University of South Carolina’s Institute for Families in Society that's almost a mantra. That’s because the recommendations made by the institute's faculty and staff are shared with policymakers and stakeholders dealing with such serious issues as mental health, trauma, abuse and neglect.

“We try to put all our efforts into translating research from an ivory tower setting into practice in the real world,” says Cheri Shapiro, the institute’s interim director. “For me, if research doesn’t impact the real world, personally, it’s not worth doing.”

At the heart of the institute’s work is addressing the need for excellent services for children and families who are facing challenges, whether those are health issues, anxiety, trauma, depression, disruptive behavior or substance abuse. That means working with nonprofits, plus federal and state agencies, such as the departments of Social Services, Juvenile Justice and Health and Human Services.

“It’s really important that we get all possible hands on deck delivering the best possible services. And those best services are what we call evidence-based,” Shapiro says. “It’s a dream to have every provider have access to the training and support they need to deliver those kinds of services. It is not inexpensive to make that happen, but I think we have to take the long view."

At Carolina, the multidisciplinary research institution falls under the College of Social Work. Among its focus areas is the Division of Integrated Health and Policy Research, led by Ana Lopez-De Fede, which concentrates on policy analysis on health and family issues that affect South Carolina and the nation. The work involves using geographic information systems to collect and quickly analyze health services research, particularly in the area of Medicaid policy.

Information pulled together by the team has been used to develop interactive health websites, such as SCHealthViz, which provides easy-to-access data about Medicaid enrollment. The geo-coded health data developed by the institute makes it easier to visualize Medicaid or health disparity data, allowing users to see data from communities around the state in myriad ways, such as by age, Medicaid enrollment, the number of in-patient hospital visits and diagnoses. That’s especially important in South Carolina, where Medicaid covers 52 percent of all births and a large portion of long-term, nursing home care.

“What we do touches a large portion of our families, and it has for 27 years,” Lopez-De Fede says. “We continue to try to figure out how to translate research in ways that different stakeholders will understand. By using methodology that allows individuals to explore information and formulate questions, that leads to changes. At the end of the day, if it doesn’t lead to policy research and impacts, then we haven’t done our jobs.”

Through the institute’s Division of Children, Youth and Families and its Center of Excellence in Evidence-Based Intervention, researchers work with state agencies to help identify and support the use of evidence-based practices to improve the lives of children and families in South Carolina.

The institute also works with the S.C. Department of Juvenile Justice to promote family-friendly approaches to working with DJJ youth. It operates within the agency to elevate the importance of families, while the DJJ Youth and Family Environmental Scan, developed by the institute, is an example of using data to assist with policy-making and program development.

“The ultimate goal is to help children, youth and families thrive and be happy and healthy and safe and secure. We do anything we can do to move a policy or a practice toward that goal,” Shapiro says. “It’s not just about eliminating suffering; I think we have to think bigger than that. It’s about creating joy and happiness and fulfillment. That’s why we do what we do.” 

Cheri Shapiro: Evidence-based intervention

Growing up as the child of physicians, Cheri Shapiro says she was raised with a strong understanding of the importance of a career grounded in service to families. She fell in love with psychology as an undergraduate and became a clinical psychologist.

“I saw it as a different way to carry forward a mission that has been steeped in me since I was very small,” she says.

Shapiro ran a statewide office for the Department of Juvenile Justice before coming to Carolina in a research role. She joined the institute in 2011, became the associate director shortly thereafter, and became interim director in October 2016. She also is the founder and principal investigator for the Center of Excellence in Evidence-Based Intervention, which helps identify and support the use of evidence-based practices for children, youth and families in South Carolina, and which is supported by the Palmetto Coordinated System of Care and the state Department of Health and Human Services.

Her work involves implementing evidence-based intervention programs for children and youth with behavior and health challenges by working to create training opportunities for clinicians.

“The heart of it is that we have dire need for excellent services for children, youth and families who are facing behavioral and health challenges, whether it be anxiety, depression, trauma, challenging behaviors or substance use,” Shapiro says.

Shapiro says researchers at the institute are constantly honing their skills and techniques to stay current and relevant.

“If I can make the world a better place, that is my goal. That is what drives me. And when I found the institute, it was like coming home,” she says. “This is what I’ve been striving for my whole career. And I get to pull it all together in one job.” 

Ana Lopez-De Fede: Policy in place

Ana Lopez-De Fede moved to the United States when she was 10, coming from a family that was actively involved in community issues and medical issues, including pharmacy and nursing.

“It’s the sense that you work to improve the lives of individuals, that’s a strong value of mine,” Lopez-De Fede says. “For me, choosing health services and health policy research is about those linkages between community and place. It’s also about looking at individuals holistically.”

Lopez-De Fede, who has a background in psychology and health policy, came to Carolina in 1987, before the institute was created. She initially worked with various departments at the university, training clinicians on treatment of abuse and neglect of children, and domestic violence.

As the leader of the institute’s large health policy research section, she explores the links between health, health service delivery systems and well-being. Her team's work focuses on using geographic data to understand health care issues, guide discussions and explore options.

“Early on, we made this connection to health and place before others were beginning to think about it. Our work always looked at the role communities play in shaping and delivering services, in looking at the ways they can foster one another,” she says.

“Back in 1987, people were not talking about use of geography with health care data, and yet early on, we began to locate individual conditions within the context of community. For us, that’s always been an important thing. Now, so much of the research and dialogue is around population research.”

Lopez-De Fede, who was one of Carolina’s 2015 Breakthrough Leadership in Research honorees, says it is important that the applied research make connections with those in and outside of academia.

“Being at the University of South Carolina, the state university, we have to look at how our work improves and shapes the lives of individuals in South Carolina,” she said. “We all have the ability to influence. That’s the motivation — to see discussions taking place over an idea. I also feel very strongly that data should be used to guide and formulate those discussions, to explore options and alternatives.”

While she knows these innovative and creative approaches work, Lopez-De Fede realizes that progress in these areas can’t be measured in leaps and bounds. “We often say, at the heart of changes is a perspective of patience. I can’t think of a single day when we don’t say, ‘Yes, that’s why we’re are doing this.’ We can put our finger on it and say that was our research that’s changing lives in South Carolina.” 

Kathleen Hayes: Juvenile engagement

Kathleen Hayes says she has spent her entire career trying to make sure children are well parented.

“If anything drives me, it’s trying to get children into good, loving and caring families,” she says. “The message I always carried is a good family is one with parents that love their children and care about that child’s needs.

“It’s not somebody who is rich, not somebody who has all the pretty things in life. It’s how regular families can be excellent parents. It is a marvel that I can still watch a family that is really doing well and with joy watch what’s going on.”

Trained as a psychologist, she has gone from working on child abuse and neglect issues in Denver to various roles in the S.C. Department of Juvenile Justice and Department of Social Services, where she focused on adoption and foster care issues before becoming director.

She saw upclose how children who aren’t supported by families can develop mental health and attachment issues and end up in the juvenile justice system. That helped her understand how vulnerable families can be.

“That led me to the institute, because the mission of the institute is to try to help all families thrive through our research,” Hayes said. “It’s different to talk about helping families through data-driven decisions versus talking about just helping families. Families need a lot, and how can you help them if you don’t have data?”

At the Institute for Families in Society, she serves as associate director, focusing her research on improvements in juvenile justice that involve greater engagement of families with youth being served by DJJ.

“Even though I didn’t intend to have a life that follows a trail, in my own mind I can draw it as somebody who’s been concerned about families and parenting and helping children in one way or another for my entire life,” Hayes says. “I love the field. I love things that can be done to make agencies better.

“And I love the fact that we have expert staff at the university who can provide results and data about families that tend to motivate policymakers in trying to inch forward in terms of progress. To me, it’s very exciting. And everybody I work with feels that way.”

Kathy Mayfield-Smith: Access and deliver

Her early work helping families who have children with disabilities navigate the system started Kathy Mayfield-Smith on the path to research and advocacy for better health care delivery policies.

She earned master’s degrees in both psychology and business, and began her career in the university’s pediatrics department. There, she worked to help improve services for people with disabilities, with much of her work focusing on information and referral fields in South Carolina and across the country.

“In some ways, I fell into it. I grew up in the ‘60s, so I’m kind of a product of that generation,” Mayfield-Smith says. “In my early years in psychology, I got a sense of some of the struggles that people were facing. As I began to work in creating information systems that helped people get connected to services, I began to see how cumbersome the system could be.”

“In many ways, it was like a foreign language. It was so complex. So, a family that has a child with disabilities is thrown into that world and has no idea where to start.”

She saw the difference her work could make in the lives of families who would be lost if someone wasn’t there to help them figure out the system. She soon began working on Medicaid issues, partnering with the Department of Health and Human Services to develop a waiver program designed to allow people who qualified for nursing home care to stay in their homes, with Medicaid helping to cover the costs.

In 2004, she came to the institute to continue her work with Lopez-De Fede. Mayfield-Smith is now a research associate professor and associate director of the Division of Integrated Health and Policy Research. Her research looks at improving quality and access to health services, disability and caregiving policy development, and access to and development of community-based services to increase health outcomes, independence and support for caregivers — particularly respite services.

“What’s most satisfying is being in this university environment and really being able to be creative and innovative and really push the needle and be on the cutting edge on some of this research,” she says. “Particularly with the GIS work. We know that geography matters in terms of people’s health, and geography matters in terms of the types of services accessible to them.­

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