The value of incorporating families’ lived experience in systems-level activities is well understood by health care providers and policymakers. However, little detail exists in the literature about what information and supports are needed to assist families and professionals throughout the process of engaging with families. In this article, researchers present a framework for family engagement grouped into four action-oriented domains: commitment, transparency, representation, and impact. Adoption of this framework by child-serving entities will support a sustainable, equitable, and meaningful process in which families can contribute to policy development and improvement.
Pediatric home health care is in crisis. Children with medical complexity require a substantial amount of medical care and activities-of-daily-living support to live at home. However, due to a shrinking pool of available home health care workers and narrow state eligibility requirements for services, most of their care is increasingly delivered by families without pay. In response, the option to pay family caregivers for their children’s medical labor is gaining national traction. This webinar provided a brief overview of laws that govern care for this population and specific models of paid family caregiving, and how they have been recently expanded in several states. Speakers explored a policy solution to pay families to provide home health care to their children with medical complexity and disabilities.
Transition from pediatric to adult health care is a critical component of care for youth and young adults, especially those with chronic conditions, but few families receive guidance on this process from providers. This article provides a comprehensive framework for health care transition, which identifies gaps and proposes measures to help improve this process. Additional attention must be paid to measuring the quality of transition to stimulate practice improvement and ensure accountability.
The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit is part of the federal Medicaid law that requires each state to provide medically necessary services to children under 21 who are enrolled in Medicaid. However, many families are unaware of EPSDT and may not know how to access services for which their children are eligible. This fact sheet answers questions about how EPSDT applies in home health care for children.
The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit is part of the federal Medicaid law that requires each state to provide medically necessary services to children under 21 who are enrolled in Medicaid. However, many families are unaware of EPSDT and may not know how to access services for which their children are eligible. This fact sheet helps answer common questions about EPSDT and provides the name of the program in each state.
The Family Health Outcomes Project at the University of California San Francisco conducted a case study to examine what was and was not accomplished following previous needs assessments of California Children’s Services, one of the programs funded in part by Title V. The author offers strategies and recommendations to ensure that progress is made on the priorities raised by stakeholders who participate in future needs assessment cycles.
The Family Voices Family Engagement in Systems Assessment Tool (FESAT), available in English and Spanish, can be used for planning, assessing, and improving family engagement in systems-level initiatives. This interview describes the experience of implementing this approach in a statewide Title V program and offers recommendations for use.
Health complexity is a concept that considers both a child’s medical and social complexity. For health systems, identifying and supporting children with health complexity directly aligns with efforts to eliminate health disparities. This webinar described how health systems can identify children with health complexity and provided actionable strategies and models to use this information to improve services and supports for families. Presenters shared real world examples and recommendations based on technical assistance provided to State Medicaid and Children’s Health Insurance Program (CHIP) agencies and health systems over the last five years. Additionally, a panel of health system leaders who have received technical assistance shared their reflections and learnings.
This brief applies health complexity, a concept that considers both a child’s medical and social complexity, to address health disparities. It includes recommendations on how state agencies and health systems can develop and use health complexity data to ensure the most vulnerable children are at the center of health system redesign.
The unwinding of the COVID-19 public health emergency presents a challenge for many families whose children will now need to undergo a Medicaid eligibility redetermination. Cara Coleman, director of public policy and advocacy at Family Voices, shares her perspective on the challenges ahead and how to advocate for CYSHCN and their families.
