In this important children’s issue of Behavioral Health News, we wish to address “Caregiver’s Challenges: Working with Families in Distress.” JCCA is a not-for-profit child welfare agency with a nearly 200-year history of providing comprehensive care to more than a million abused, neglected, and traumatized youth and their families.
As mission-driven non-profit organizations, we know that the profile of the members we serve is not unique; we are aware of “who” we serve and “why” we serve them. Medicaid Redesign, however, offers a unique opportunity to focus on “how” and the “what” of service delivery and overall health outcomes. Children with complex and/or chronic conditions frequently experience fragmented or poorly coordinated care, placing them at a greater risk of hospitalization. Even on an outpatient basis, this cohort often receives unnecessary or redundant assessments, tests, or procedures, as well as conflicting information from multiple providers working in silos. The compounding result is poor clinical outcomes and increased costs. Less visibly, but just as important, these systems leave caregivers in distress, overwhelmed by the healthcare system and more vulnerable to disengaging from all services until the next crisis.
Children with the most serious and complex needs are frequently involved in multiple child-serving systems (e.g., mental health, child welfare, juvenile justice, tracked into special-education at a young age) which is a sentinel indicator for risk of out of home placement. Providers need to assess and address the external and internal factors interfering with a caregiver’s ability to remain engaged in services, for and with their children. Caregivers want to meet the needs of their children, but they often struggle with knowing how, when, and where to get help.
The caregiver’s voice as well as opportunities to make decisions regarding services and interventions are essential for ongoing family engagement. Successful collaboration between the family and the provider is required when identifying and supporting caregivers’ challenges. Caregivers need to trust and believe that providers are on their side and share their vision and goals. Providers become the linchpin to explaining the healthcare landscape, assuring caregivers of strategies that align with their goals, and level-setting expectations for how multiple providers can work seamlessly toward the same Care Plan, thereby allowing a distressed family to experience their Care Team as their partners and advocates.
Providers must foster synergistic relationships with caregivers, creating opportunities toward skill building that engender their independence and reinforcing their resolve to be successful in their child(ren)’s care planning goals. Very often, caregivers struggle to access the tools or resources needed to successfully meet the challenging needs of their child(ren). These challenges are frequently further compounded by limited resources; these social determinants of health can impede their ability to attend or manage the constellation of acute and chronic needs of all family members.
Compounding complex medical and behavioral needs are day-to-day social and economic factors like food insecurity, housing instability, and social isolation (Long et al., 2017). The lack of resources to meet basic needs such as stable housing, education, food security can understandably become the caregiver’s primary focus overshadowing their attention and ability to address behavioral health and chronic medical issues. “Powerful drivers of health lie outside the conventional medical care delivery system, so we should not equate investment in clinical care with investment in health. Investment in clinical care may yield smaller improvement in population health than equivalent investment that address social and behavioral determinants” (Adler, et al., 2016). Providers therefore must focus on ameliorating the distress of families with multiple and complex medical and behavioral health needs. Otherwise, providers miss a critical intervention and opportunity to meaningfully engage child(ren) and their caregivers in services or treatment. Addressing these barriers and challenges is fundamental to supporting stability in the community, re-enforcing the Care Plan goals, maintaining continuity of care across multiple providers, and encouraging resilience post-crisis or acute episode. It is within this holistic approach that providers working with distressed caregivers impart hope and foster support.
The integration of these interventions also supports continued caregiver buy-in. Comprehensive approaches focusing on safety, prioritizing social determinants of health, and offering sufficiently nimble interventions to support transitions from inpatient settings back into the community provide both a safety net and a bridge for caregivers during crisis and post-crisis transitions.
This approach can strengthen engagement, serve as the conduit for multiple providers to remain knowledgeable of recent crises, simultaneously assist in managing the crises itself, and improve the child and family’s stability. To illustrate, we offer the below brief vignette of a member and caregiver receiving serves from JCCA. Recently, JCCA’s Health Home program enrolled the below family into Coordinated Behavioral Care’s (CBC) Health Home (HH) Care Management Services.
“Sabrina” is a single mother residing in Brooklyn who is facing a multitude of concerns, including meeting her three children’s special needs. She currently has an open case with the Administration for Children Services (ACS), and like many of those served by JCCA, she is experiencing housing instability. Sabrina’s 15-year-old daughter was enrolled into CBC’s Health Home Serving Children (HHSC) program in June 2018 under the eligibility criteria of a Severe Emotional Disturbance diagnosis. Sabrina’s daughter ran away from home for two weeks following a verbal dispute with her mother. Upon return she attempted to engage in self injurious behaviors. As a result, Sabrina called 911 and her daughter was admitted to a Long Island hospital in New York. While in the ambulance, Sabrina called her daughter’s JCCA Health Home Care Manager (HHCM). Recognizing the heightened level of stress and the challenges of navigating the health care system, particularly for an overburdened family at a time of crisis, the HHCM met Sabrina at the hospital and stayed with her until well after midnight. While at the hospital, the HHCM helped Sabrina stay updated on her daughter’s condition and, once her daughter was admitted to the inpatient unit, ensured that Sabrina understood what would occur during the admission. Because the HHSC consent was in place prior to admission, the HHCM was also able to remain in frequent contact with Sabrina’s daughter’s pediatrician during her week-long stay. The HHCM successfully secured Sabrina’s engagement by being present during the admission, thereby establishing trust and ongoing support. The HHCM also participated in discharge planning, helping the family to better understand the child’s aggressive behavior and suicidal ideation as symptoms of her diagnosis. Supporting a safe transition back into the community, the HHCM informed of the adolescent’s providers of the recent crisis and need for stabilization. Upon Sabrina’s daughter’s discharge, the HHCM worked with the community providers to ensure she attended her outpatient mental health appointment following her discharge, supported Sabrina and her daughter’s understanding of her medication, reviewed the importance of taking her medication and assisted Sabrina in an appropriate school program enrollment for her daughter.
A coordinated behavioral health system that addresses the gaps between need and care is essential in helping families in distress. “The health home model’s whole-person approach—encompassing comprehensive care management and coordination, integration of physical and mental/behavioral care, and links to non-clinical supports—thus has the potential to improve the overall health and quality of life for some of the most vulnerable Medicaid beneficiaries” (U.S. Department of Health & Human Services Assistant Secretary for Planning & Evaluation Office of Disability, 2017).
Community-based care management services under the HHSC model supported JCCA’s HHCM in offering targeted and persistent care coordination. This resulted in a greater safety net, a more comprehensive array of service coordination across a delivery system (outpatient behavioral health services, inpatient, shelter, PCP and pharmacy), meeting the goal of better integrated services, improved engagement and health outcomes, and reduced costs. This coordination began with establishing rapport with the family during HHSC enrollment, being present and supportive during the crisis and hospital admission, conducting follow up with treatment providers during the hospital stay, participating in the discharge planning, being available during the transition to the community and re-establishing new linkages post hospitalization. As a result of joining with the family to support their needs, the adolescent is currently medication-adherent, receptive to working on her relationship with her mother, in an appropriate school-setting that supports her behavioral needs and is connected to a supportive peer group.
About the authors: Kathleen Rivera, LCSW, is Senior Vice President of Care Management Services at JCCA. Amanda Semidey, LCSW, is Vice President of Care Coordination Services at Coordinated Behavioral Care (CBC).