The Collaborative Improvement and Innovation Network for Children With Medical Complexity.

In response to a number of emerging issues, in 2017 the federal Maternal and Child Health Bureau funded its first collaborative quality improvement network aimed at improving the quality of life for children with medical complexity, the well-being of their families and the cost-effectiveness of their care. This paper is intended as a brief introduction to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity or CMC CoIIN project. In it, you will learn about the origins of the project, the guiding principles used to cocreate and promote measurable, meaningful family engagement in systems-level change efforts, its goals and objectives, the impact of the coronavirus disease 2019 pandemic on the project and some high-level learnings from our experiences, which have implications for future care delivery improvements for this growing and vulnerable population of children.

Trauma-Informed Leadership in Quality Improvement: What We Learned From Practicing in a Pandemic.

In 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval. In this article, we synthesize qualitative and descriptive findings from these varied data sources within the framework of the trauma-informed principles we applied as a leadership team to prevent burnout, increase resilience, and maintain progress among all project participants, especially clinicians and the uniquely vulnerable family leaders. Lessons learned will be offered that can be applied to future natural and human-made emergencies that impact responsive pediatric care delivery improvement.

What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change.

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing. We transcribed and coded the responses to uncover salient themes. We uncovered 2 major themes from families with direct applicability to systems of care: "What's Missing - Human Dignity" and "What Families Really Need and Recommend in Care." Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centering the whole child, building relationships of trust and communication, and valuing family-to-family supports to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis. The highly untenable cost of navigating dehumanizing systems of care reduces quality of life and wellbeing and must be transformed.

Addressing Emerging Needs Through the COVID-19 and Children With Medical Complexity ECHO.

The COVID-19 and Children with Medical Complexity (CMC) Extension for Community Healthcare Outcomes (ECHO) was developed as a "just in time" learning format to respond to the vast number of challenges faced by health care clinicians, public health professionals, and families/caregivers of CMC during the coronavirus disease 2019 (COVID-19) pandemic. A unique aspect of the ECHO was the meaningful integration of family leaders who participated as faculty, learners, case study presenters, and guest lecturers. Another distinguishing feature of this ECHO was its inclusion within a Collaborative Improvement and Innovation Network. A mixed methods analysis found that the COVID-19 and CMC ECHO was associated with significant gains in knowledge and confidence in caring for CMC and their families during the COVID-19 pandemic. This article provides an overview of the results of the COVID-19 and CMC ECHO and provides recommendations related to utilizing the ECHO model as a rapid response mechanism for systems improvement, clinical practice improvement, and education during a public health emergency.

Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems.

Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), presented by the Maternal and Child Health Bureau at the Health Resources and Services Administration, outlines principles and strategies that can be implemented at the federal and state levels and by health systems, health care providers, payors, and advocacy organizations to achieve a strong system of care for children and youth with special health care needs (CYSHCN). The vision for the financing of services outlined in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and their Families is one in which health care and other related services are accessible, affordable, comprehensive, continuous, and prioritize the wellbeing of CYSHCN and their families. There are several barriers caused or exacerbated by health care financing policies and structures that pose significant challenges for families of CYSHCN, including finding appropriate and knowledgeable provider care teams, ensuring adequate and continuous coverage for services, and ensuring benefit adequacy. Racial disparities and societal risks all exacerbate these challenges. This article outlines recommendations for improving financing for CYSHCN, including potential innovations to address barriers, such as state Medicaid expansion for CYSHCN, greater transparency in medical necessity processes and determinations, and adequate reimbursement and funding. Financing innovations must use both current and new measures to assess value and provide evidence for iterative improvements. These recommendations will require a coordinated approach among federal and state agencies, the public sector, the provider community, and the families of CYSHCN.

Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs.

OBJECTIVE: Children and youth with special health care needs (CYSHCN) have a range of medical, educational, and support service needs to achieve optimal health and wellness. Principles of care for CYSHCN have been well described, but the literature is lacking particularly on implementation and integration of care across different settings and systems. The objective of this manuscript is to define a research agenda for principles of care for CYSHCN. METHODS: Literature review examined principles of care for CYSHCN. Existing research gaps and priorities for principles of care were drawn from the literature review, a recently developed national research agenda for CYSHCN, and stakeholder consensus. RESULTS: Specific implementation areas of inquiry include family partner roles within and across systems; life course approach for CYSHCN; roles and training of interdisciplinary team members; and implementation, spread, and sustainability studies. Proposed methods include implementation science-based and comparative effectiveness research. A common set of metrics including health care utilization, clinical outcomes, and family and provider needs should be considered to evaluate implementation of principles of care. CONCLUSIONS: Implementation science and comparative effectiveness methods are needed to further understanding about how to adopt and spread principles of care for CYSHCN. The evolving demographics of CYSHCN add relevance and urgency for research findings.

Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs.

Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe 3 potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multistakeholder research agenda development process. We focus on 3 areas: benefits, payment models, and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications.

Access to care among children with disabilities enrolled in the MassHealth CommonHealth Buy-In program.

Children with disabilities utilize more health-care services and incur higher costs than other children do. Medicaid Buy-In programs for children with disabilities have the potential to increase access to benefits while reducing out-of-pocket costs for families whose income exceeds Medicaid eligibility. This study sought to understand how parents and caregivers of Massachusetts children with disabilities perceive access to care under CommonHealth, Massachusetts's Medicaid Buy-In program. Parents and caregivers ( n = 615) whose children were enrolled in CommonHealth participated in a survey assessing the impact of the program. Qualitative data were coded across five access domains-availability, accessibility, accommodation, affordability, and acceptability. Data suggest that CommonHealth improves access to care for children with disabilities by providing the benefits that were limited in scope or unavailable through other insurance before enrollment and by making available services more affordable. Policy and administrative changes could improve the program and further increase access to care for children with complex, costly conditions. Adopting a Medicaid Buy-In program may be an effective way for states to create a pathway to Medicaid for children with disabilities whose family income is too high for Medicaid and who have unmet needs and/or whose families incur high out-of-pocket costs for their care.

Identifying intangible assets in interprofessional healthcare organizations: feasibility of an asset inventory.

Healthcare systems increasingly use business models that focus on tangible assets such as finances and facilities. Yet intangible assets, such as values, relationships and human capital, remain critical for understanding the worth of interprofessional healthcare education and collaboration. We implemented a novel interprofessional collaborative pilot exercise to explore the feasibility and usefulness of an Asset Inventory-using KJ methodology and an appreciative inquiry perspective-to identify and better understand intangible assets and their value in interprofessional healthcare education/training organizations, for planning, and as a first step toward informing strategic decision-making. Twenty-eight faculty physicians, nurses, psychosocial and family faculty, educators, health services researchers and administrative staff participated. Participants identified intangible assets in five categories: Philosophy/Mission, Practice/Practical Strategies, Human Capital, Scholarship/Research Productivity, and Partnerships. Participants reported a greater understanding of intangible assets, and increased enthusiasm, organizational confidence, and stakeholder ownership for healthcare education programs. While this study is preliminary, the Asset Inventory may prove useful to enhance understanding of the importance of intangible assets within interprofessional healthcare education/training organizations, to inform planning and decision-making, to identify and foster interprofessional collaborative capacity across clinical and training settings, and to leverage intangible assets in today's rapidly changing business-focused healthcare systems.

Families of Children With Medical Complexity: A View From the Front Lines.

This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.

Statement of the Problem: Health Reform, Value-Based Purchasing, Alternative Payment Strategies, and Children and Youth With Special Health Care Needs.

There is increasing interest in maximizing health care purchasing value by emphasizing strategies that promote cost-effectiveness while achieving optimal health outcomes. These value-based purchasing (VBP) strategies have largely focused on adult health, and little is known about the impact of VBP program development and implementation on children, especially children and youth with special health care needs (CYSHCN). With the increasing emphasis on VBP, policymakers must critically analyze the potential impact of VBP for CYSCHN, because this group of children, by definition, uses more health care services than other children and inevitably incurs higher per person costs. We provide a history and definition of VBP and insurance design, noting its origin in employer-sponsored health insurance, and discuss various financing and payment strategies that may be pursued under a VBP framework. The relevance of these approaches for CYSHCN is discussed, and recommendations for next steps are provided. There is considerable work to be done if VBP strategies are to be applied to CYSHCN. Issues include the low prevalence of specific special health care need conditions, how to factor in a life course perspective, in which investments in children's health pay off over a long period of time, the marginal savings that may or may not accrue, the increased risk of family financial hardship, and the potential to exacerbate existing inequities across race, class, ethnicity, functional status, and other social determinants of health.

The Eye of the Beholder: A Discussion of Value and Quality From the Perspective of Families of Children and Youth With Special Health Care Needs.

There is broad agreement that increasing the cost-effectiveness and quality of health care services, thereby achieving greater value, is imperative given this country's current spiraling costs and poor health outcomes. However, how individuals or stakeholder groups define value may differ significantly. Discussion of value in the context of health care, in particular value-based purchasing and value-based insurance design, must acknowledge that there is no universal consensus definition as to what constitutes value. To date, the consumer perspective has been underrepresented in discussions of value-based strategies such as pay for performance, capitated and bundled payments, and high-deductible health plans, which have been driven primarily by payers and providers. This article will discuss 3 elements of value from the perspective of families of children and youth with special health care needs: the role of families in the delivery of care, consumer perspectives on what constitutes quality for children and youth with special health care needs, and health care and health care financing literacy, decision-making, and costs. The undervalued contributions made by family members in the delivery and oversight of pediatric care and the importance of partnering with them to achieve the goals of the Triple Aim are stressed. The article closes with a discussion of recommendations for a future policy and research agenda related to advancing the integration of the consumer perspective into value-based purchasing and value-based insurance design.

The Louisiana Family Opportunity Act Medicaid Buy-in Program.

OBJECTIVES: The Family Opportunity Act Medicaid Buy-In Program (FOA) allows states to expand Medicaid coverage to children who meet selected disability and income eligibility criteria. FOA programs may help address family financial hardship as a result of underinsurance. We provide specific information about the FOA program and report the first results of a survey of parents or guardians of children with disabilities who were enrolled in Louisiana's FOA program. METHODS: A convenience sample of families enrolled in the program (N = 52) responded to questions derived from the National Survey of Children with Special Health Care Needs (CSHCN). These results were compared to two groups of Louisiana families of CSHCN that had responded to the 2009/10 national survey. RESULTS: Data suggest that children enrolled in the Louisiana FOA are younger than those enrolled in Supplemental Security Income, are more likely to have functional losses, and, perhaps due to their age, are less likely to have difficulty with anxiety, depression, or behavior problems. FOA families are less likely than families in either group to report receiving help with care coordination, and more likely to report financial problems due to their child's health. Respondents were also more likely to report that they received all the therapy services and specialty care they needed. CONCLUSIONS: The FOA program thus appears to be filling a niche in coverage needs among families of children with disabilities in Louisiana.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009-2010.

OBJECTIVE: To report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009-2010 and assess changes since 2001. METHODS: Data were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009-2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009-2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. RESULTS: The proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009-2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. CONCLUSIONS: There has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.