Virtual Cafe Series: The Future of Care for Children with Medical Complexity

The Future of Care for Children with Medical Complexity (CMC) Virtual Cafe Series is a family-partnered, inter-disciplinary series of presentations by nationally recognized experts in the care of CMC. Hosted by Boston University School of Social Work’s Center for Innovation in Social Work and Health (CISWH), six virtual cafes took place from March to December 2024, with the goals of advancing actionable systems change in policy, clinical practice, research, and interdisciplinary education to improve child and family quality of life and wellbeing. 

The typical format of the cafe sessions included informative presentations followed by breakout sessions. In these breakouts, attendees had the opportunity to discuss topics that matter most to CMC and their families, ask questions, and share perspectives. The cafe discussions and related products were shaped by thoughtful engagement of an interdisciplinary faculty, the majority of whom identified as family and/or caregivers of CMC and children and youth with special health care needs (CYSHCN).  Participants included family partners, pediatric primary and specialty care providers, researchers, advocates, payers, maternal and child health professionals, state and federal agency staff, and others.  

This cafe series built on learnings from the 2022 Future of Care for Children with Medical Complexity National Convening and the Collaborative Improvement and Innovation Network to Advance Care for CMC (CMC CoIIN) Pediatrics journal supplement. 

In this impact story, we highlight key insights and recommendations from each cafe discussion and share what the team behind the series has planned as next steps.  

Cafe 1: Where We Are Now and Where We Need to Go 

The first cafe provided an overview of key topics, major frameworks, and emerging trends to advance quality of life and well-being of CMC and their families. Speakers outlined the Blueprint for Change, a framework to advance the system of care for CYSHCN, and the CMC Collaborative Improvement and Innovation Network (CoIIN), which tested and spread promising care delivery strategies and payment models for CMC.  

Speaker Cara Coleman encouraged attendees to think of disability not from a medical perspective, which views a person’s disability as an impairment inherent to their own limitations, but rather from a social perspective, which views a person’s disability in the context of societal and environmental barriers that prevent full participation in society.  

“Using more narrative practices, building narrative competencies, and understanding how to listen and tell stories that drive systems change might be some ways… to get us to improved results.”  

– Cara Coleman, JD, MPH, founder of the Bluebird Way Foundation  

Attendees were prompted to discuss where the smallest change can make the biggest difference in the care of CMC, and how to leverage care innovation.   

• Reducing administrative burdens, such as limiting preauthorization policies and minimizing paperwork. 

• Improving care coordination and collaboration between families and medical staff. 

• Expanding access to services, support, and funding. 

• Leveraging innovative care models and shared data. 

• Fostering interdisciplinary education and training. 

• Prioritizing family-driven research and quality improvement. 

Watch the recording of Cafe 1, view products, and learn about the speakers on this resource page. 

Cafe 2: Humanism in Clinical Care to Meet Whole Child/Family Needs 

Cafe 2 focused on embedding humanism into health care systems to improve care delivery and mitigate systems-level bias. Humanism is the practice of prioritizing relationships, human experiences, and dignity. In the context of health care, humanistic practitioners care about their patients just as much as they take care of them. At its core, humanism is compassion.  

“Values and principles give us the direction for where systems can go.” 

– Dr. Dennis Kuo, Professor of Pediatrics at the University of Rochester  

The cafe speakers and participants brainstormed techniques, strategies, and tools to help operationalize humanism in care:  

• Trust building and active listening. 

• Communication and humble inquiry. 

• Flexible care delivery to meet the needs of the family and child. 

• Multidisciplinary care teams that include families as partners. 

Watch the recording of Cafe 2, view products, and learn about the speakers on this resource page. 

Cafe 3: Meaningful Policy Opportunities that Matter to Families 

Cafe 3 focused on policy priorities to codify humanism in care. Health care financing in the United States does not codify humanism, thus posing an obstacle to embedding it into health care delivery. There are some policy tools that can help advance the care of CMC, such as the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, the Advancing Care for Exceptional (ACE) Kids Act, and similar care models, but they are underutilized. 

“Health care financing policy is the ways in which laws, procedures, incentives, regulations, customs, occur… so that things happen, things get paid for, and people get taken care of.” 

– Meg Comeau, MHA, CISWH Senior Project Director 

During Cafe 3, Lisa Kirsch, MPAff, of Dell Children’s Medical Center Comprehensive Care Clinic (CCC), presented CCC’s relationship-based care model. By providing each family with a nurse coordinator, giving families access to a shared data platform with information on the child’s care, and leveraging telemedicine and other health technology to better integrate care with specialists, Dell Children’s commits to their belief that health care financing policy should incentivize care integration and family-centered care.  

At the end of cafe 3, participants discussed additional approaches to improving care for CMC that could be better embedded into health care policy. Some key takeaways from this discussion include: 

• Streamlining prior authorizations for services and equipment. 

• Better equipping in-hospital pharmacies. 

• Enhancing access to transportation for families. 

• Leveraging telehealth to increase access to care. 

Watch the recording of Cafe 3, view products, and learn about the speakers on this resource page. 

Cafe 4: Family-Driven Approach to Understand Well-being and Its Facilitators 

In Cafe 4, the speakers delved into the meaning of family well-being, the factors that contribute to well-being for families of CMC, and research that was shaped by a family-driven approach. Participants discussed meaningful ways of assessing well-being for families of CMC and ideas for building awareness on what makes family well-being possible. 

Speaker and parent of a child with complex needs, Nikki Montgomery, described the importance of family partnership  in improving quality of life and well-being for families of CMC.  

“I believe very firmly that you’re not going to find solutions without involving the people who are experiencing the problem, and that those people actually have really practical solutions.”  

– Nikki Montgomery, Director of Strategy and Communications at Family Voices  

The cafe speakers and participants discussed systems level solutions that can support family well-being. Key ideas for health systems to consider include: 

• Directing providers to visit families outside of a hospital or urgent care setting. 

• Paying attention to non-verbal indicators of families’ well-being during medical appointments

• Meeting families where they are by sharing health information through their preferred channels. 

• Hiring medical professionals that speak multiple languages, so translators are not always needed. 

• Increasing the length of appointments so families have the time to speak openly. 

• Understanding the specific inadequacies in policies from family experiences to effectively change them. 

Watch the recording of Cafe 4, view products, and learn about the speakers on this resource page. 

Cafe 5: Health Equity and Anti-Ableism Through Family Partnership 

In Cafe 5, the speakers explored the intersection of ableism with other forms of discrimination, common responses to biases in health care, and strategies for confronting bias at the individual and systems level. Participants discussed scenarios of harm from bias and learned about ways to effectively partner with families to make progress.  

Dr. Michelle White shared a suggestion for addressing biases that may exist within innovations and programs for children’s health. 

“Are all children benefitting equally from a program or innovation? This question can be very, very powerful because there is this assumption sometimes that a rising tide just naturally lifts all boats…The evidence simply doesn’t support that. Often, we need processes that are tailored to specific groups in order to achieve equity.”  

– Dr. Michelle White, Associate Professor of Pediatrics and Assistant Professor in Population Health Sciences at Duke University  

The cafe speakers and participants discussed systems level solutions that can advance health equity and address ableism in health care. Key ideas for health systems to consider include: 

• Partnering with other disciplines, including families that have lived expertise. 

• Being curious and asking questions. 

• Helping families to develop their voice for advocacy. 

• Putting the onus on the health system, rather than families, to address biases. 

• Providing anti-ableism training for staff at all levels. 

• Increasing awareness of trauma-informed care. 

• Understanding how to put shared decision-making with families into action. 

• Engaging individuals with experience and expertise in health equity work. 

Watch the recording of Cafe 5, view products, and learn about the speakers on this resource page. 

Cafe 6: Sustainability and Strategic Partnerships 

In Cafe 6, the speakers described opportunities for sustainable solutions through family co-design and approaches for moving from small wins to broader systemic change. Participants learned about strategies for building partnerships with different stakeholders to advance the sustainability of human-centered care. 

Dr. Rahel Berhane underlined the importance of partnering with families to understand the challenges in the care of their children and co-design sustainable systems. 

“When the problem is understood, rooted in the daily reality of life lived, the questions that we ask to figure out how to solve these problems are going to be directed in the right way.” 

– Dr. Rahel Berhane, Medical Director of Dell Children’s CCC  

The cafe speakers and participants discussed systems level solutions that can support sustainability and strategic partnerships. Key ideas for health systems to consider include: 

• Identifying the right measures at every level of the health care ecosystem to tell an actionable story. 

• Bringing policymakers into the conversation and having them hear families’ stories about caring for CMC. 

• Trusting families, respecting their expertise, and sharing power. 

• Ensuring that solutions are driven by the lived experiences of families. 

• Making sure that there is a person with lived experience involved in designing the measure and modality for data collection. 

• Developing coalitions locally and nationally. 

Watch the recording of Cafe 6, view products, and learn about the speakers on this resource page. 

Conclusion 

The CMC Cafe Series provided a unique opportunity for family partners, clinician faculty, and other diverse stakeholders to share varied perspectives. The insights that grew from this cafe series can be powerful tools for education and advocacy among policymakers, health departments, family partners, clinicians, and other stakeholders to transform systems of care for CMC and their families

The Boston University CISWH team continues to collaborate with family faculty alongside clinicians and stakeholders to develop an actionable framework for humanism in care that centers the priorities of families of CMC. The framework will include case studies and strategies for supporting systems change efforts to improve care for CMC and families. The framework will be released in late 2025 and will be available on our website.