• Article
  • August 22, 2018

Expanding Care Coordination to Promote Children's Health, Development and Well-being

Cross-sector care coordination can have a life-changing effect on children and their families. Here's how one organization is supporting children with special health care needs, those in behavioral health crisis, and those who are at risk for developing delays and disorders due to the effects of poverty and other social factors.

By Susan Roman, RN, M.P.H., and Paul H. Dworkin, M.D.

Veronica relocated to East Hartford, Connecticut, from Puerto Rico in 2015 with her two sons, the youngest who was diagnosed with muscular dystrophy about one year after Veronica's husband passed away from cancer. They moved in with her in-laws but struggled to navigate the health care system, lacked transportation and were unable to access other needed services.

Frustrated and devastated, Veronica found her way to Connecticut Children's Center for Care Coordination. The center's staff members conducted an initial phone screening, assigned the family a care coordinator and conducted a family assessment.

The center's care coordinators helped Veronica find a primary care physician, apply for health insurance and enroll her sons in school. They also referred her to a temporary employment agency, a local food bank, the Salvation Army, town social services and the federal Supplemental Nutrition Assistance Program. In addition, the team helped her join a waiting list for her own apartment and lined up transportation to medical appointments.

Now, the family lives in their own home, and Veronica's son is receiving specialized services for his diagnosis. Veronica has become an active member of her community, is working toward her graduate degree, and is teaching parents how to advocate for their children.

Cross-sector care coordination can have a life-changing effect on children and families. Veronica's story highlights the ability of care coordinators in a children's hospital to support families during times of need, connect them to services across child-serving sectors, and empower them to do all they can to ensure their children reach their fullest developmental potential.

Supporting all children

Historically, the Connecticut Children's Center for Care Coordination focused on providing care coordination support for children with special health care needs. Today, the center's model uses a cross-sector approach to support all children, including those with special health care needs, those in behavioral health crisis, and those who are at risk for developing delays and disorders due to the effects of poverty and other social factors. This shift in focus occurred over many years.

The center's existence predates Connecticut Children's Medical Center's launch in 1996. At that time, the center provided services to children with special health care needs as part of Newington Children's Hospital. When Connecticut Children's opened, care coordination services from Newington Children's migrated to the new facility as the Special Kids Support Center (SKSC), with a small, dedicated team of nurses and family support coordinators helping families connect to medical resources, obtain insurance coverage and use advocacy supports.

However, access to the SKSC was limited in its scope and reach by funding from the Connecticut Department of Public Health. Connecticut Children's leadership recognized a need to provide services to a larger population and requested permission to expand the SKSC's focus beyond children with special health care needs.

But the Department of Public Health preferred to remain focused on children with special health care needs, so the SKSC decided to forgo state funding. Instead, the support center would rely on endowment funding to move forward with a goal of serving all children.

In 2009, the Department of Public Health began to recognize the value of expanding the target population and asked the SKSC to become the regional provider for care coordination for children with special health care needs and vulnerable families through its Medical Home Initiative.

Ultimately, with the advent of the patient centered medical home in 2014, the Department of Public Health expected all five of Connecticut's regional care coordination centers to expand their target populations. The department asked regional centers to build relationships with child-serving sectors, including the state's Medicaid administrative services organization.

This opportunity enabled the SKSC to expand its capacity for delivering care coordination and serve more clients. The SKSC began providing care coordination services to more children with special health care needs, as well as to vulnerable, at-risk children within Connecticut Children's primary care center and specialty practices.

Promoting kids' healthy development

The SKSC embedded bilingual, bi-cultural, non-licensed community coordinators in various practices and in their communities. During the first five years of support from the Connecticut Department of Public Health Title V grant, the SKSC screened 9,600 children for special needs and provided care coordination service to more than 50 percent of those who were screened.The SKSC also encouraged community pediatric practices to adopt the medical home model.

The SKSC partnered with pediatric providers to support families that did not need medical coordination but were affected by the social determinants of health. The support center also consulted with providers and trained practice staff on how to provide low-level care coordination activities for their patients. More than 25 primary care practices have received training to date.

In 2012, the SKSC became one of the first programs to join the newly launched Connecticut Children's Office for Community Child Health (OCCH). Connecticut Children's formed OCCH to provide families access to programs and services that support them in promoting their child's healthy development.

OCCH now oversees 15 community-oriented programs that address a variety of factors beyond health care that influence a child's development, such as food and nutrition, housing, economic development, child welfare and transportation. The SKSC's move to OCCH allowed for ongoing technical and programmatic support, opportunities to diversify the portfolio of services, blend financial resources, and the ability to rebrand the SKSC into the Connecticut Children's Center for Care Coordination.

A family-centered approach to health

In 2013, to align with the focus of OCCH, the Center for Care Coordination enhanced its support to children and families affected by the social determinants of health. The center transformed care coordination delivery by embracing a family-centered approach to health and well-being.

With the adoption of the Strengthening Families Protective Factors Framework, the center's nurses, social workers and community care coordinators use a research-informed approach. This supports and improves parental resilience, builds social connections, enhances parents' knowledge of parenting and child development, increases families' support in times of need, and promotes the social and emotional competence of children.

Data from 2017-18 show:

  • 82 percent of care coordination encounters at the center involved requests related to providing support in time of need
  • 32 percent of encounters strengthened parental resilience

The Connecticut Department of Public Health provided additional funding to train the state's medical home regions and regional care coordination collaboratives on how to incorporate the Protective Factors Framework into their everyday work to enhance support for children and families.
Collaborative model

The center launched the Care Coordination Collaborative Model in 2010. Prior to this, an array of care coordinators from diverse child- and family-serving groups (early care and education, family support, housing, food and nutrition) served children and families individually. But a lack of coordination resulted in redundant efforts that were confusing and at times overwhelming for families. Multiple care coordinators from different sectors were unknowingly duplicating services and increasing costs.

Today, care coordinators from various sectors, such as child welfare, health, and developmental services, regularly discuss their efforts to jointly problem solve. This approach:

  • Improves communication among programs and across sectors
  • Increases the efficiency and effectiveness of care coordination within a comprehensive child health system
  • Serves as a resource for primary care medical homes seeking community-based services for families
  • Fosters seamless care for children and families so they can easily receive services across multiple sectors

Since its inception, this model has expanded statewide through five regional collaboratives that the Connecticut Department of Public Health funds and oversees. The center has also supported expansion of this model to other states.

Care coordination pilot program for behavioral health

After the tragedy at Sandy Hook Elementary School in Newtown, Connecticut, in 2012, community providers and emergency department physicians began to refer more children and youth experiencing behavioral health crises to the center. The center responded by employing mental health social workers and developing the capacity to offer services, including bridging the gap between primary care providers, behavioral health providers and the education system.

The spike in referrals led to the development of a pilot program to embed care coordinators in Connecticut Children's Medical Center's pediatric Emergency Department (ED). The coordinators developed treatment plans for children arriving to the ED in a behavioral health crisis and connected them to community services upon discharge.

The sentinel case for this decision involved a child with a myriad of diagnoses and no comprehensive, coordinated behavioral health plan to address those issues. Providers housed the child in the ED for weeks until care coordinators developed a plan to address his ongoing needs, and then they placed him in the appropriate treatment facility. Since the initial intervention, providers have not re-admitted this patient to the ED for acute mental health episodes.

Networking across disciplines

For the last three years, the Center for Care Coordination has convened an annual Care Coordination Forum. The forum provides care coordinators from a variety of disciplines the opportunity to learn, share, teach and network with colleagues across the nation. The forum addresses contemporary child and family issues with an emphasis on cross-sector collaboration.

Care coordination into the future

The evolution of the center and its work has enabled a group of pediatric nurses, social workers, community care coordinators, program and data specialists, and administrative staff to think strategically about the value of providing enhanced services to families, providers and the organization.

The center's capacity is important for supporting Connecticut Children's goals for population health, value-based care and building a comprehensive child health care system. Ongoing efforts include a commitment to better integrate care coordination, case management and utilization review activities.

Susan Roman, RN, M.P.H., is the program director for Connecticut Children's Center for Care Coordination. Paul H. Dworkin, M.D., is the executive vice president for community child health at Connecticut Children's, the director of Connecticut Children's Office for Community Child Health, and the founding director of the Help Me Grow National Center. Dworkin is also a professor of pediatrics at the UConn School of Medicine. Send questions or comments to magazine@childrenshospitals.org.