Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement.

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.

Family perspectives on provider conversations about housing needs for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. METHODS: From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. RESULTS: Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. CONCLUSIONS: Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

A gap in the data: Defining, identifying, and tracking children with medical complexity in the child welfare system.

BACKGROUND: Among nearly 400,000 children in US foster care, an estimated 10 % are medically complex. Yet, population-level data about children with medical complexity (CMC) served by the child welfare system, both for prevention and foster care services, are largely unavailable. OBJECTIVE: To understand how US child welfare agencies define, identify, and track CMC. PARTICIPANTS AND SETTING: Child welfare agencies across the US. METHODS: Agencies were recruited to complete a survey as part of a larger study exploring how CMC are served by the child welfare system. Survey responses related to defining, identifying, and tracking CMC were included in analysis. Descriptive statistical analysis was conducted with Stata. Qualitative content and thematic analysis were applied to free text responses. RESULTS: Surveys were completed by agencies from 28 states and 2 major cities. Nearly half of the agencies did not have a clear definition to identify CMC; those that did have a definition often lacked standardization. The majority of agencies could not easily identify CMC or access CMC-related data within data systems. Agencies described lack of a clear definition as a barrier to collecting population level data. CONCLUSIONS: Many US child welfare agencies lack a clear definition to identify and track CMC, impacting the ability to tailor care and service delivery to meet their unique needs. To address this, a clear definition for CMC should be developed and consistently applied within child welfare data systems. Once CMC are identifiable, future research can collect population-level data and provide recommendations for best practices and policies.

Identifying Children in Foster Care and Improving Foster Care Documentation in Primary Care.

Background: Children and youth in foster care (CYFC) are a population with special healthcare needs, and the American Academy of Pediatrics has healthcare standards to care for this population, but implementation challenges include identifying clinic patients in foster care (FC). Documentation of FC status in the Electronic Health Record (EHR) can support the identification of CYFC to tailor care delivery. Therefore, we aimed to improve the percentage of CYFC with problem list (PL) documentation of FC status from 20% to 60% within 12 months. Methods: This study used a five-cycle plan-do-study-act quality improvement model in two co-located primary care teaching clinics. The primary outcome was the weekly percentage of patients with FC status on EHR PL. Ishikawa cause and effect analysis and resident survey identified barriers and informed interventions: education, patient list distribution, documentation training, email reminders, and clinic champion. We constructed statistical process control charts of the primary outcome to assess for improvement. Results: Mean weekly percentage of patients with FC status on PL improved from 19.8% to 60.2%. The most extensive improvements occurred after designating a clinic champion and providing email reminders with enhanced patient lists. The sustainability of PL documentation (mean = 71.7%) was demonstrated 3-4 years after the completion of plan-do-study-act cycle interventions. Conclusions: Educating providers, collaborating with child welfare to provide patient lists to providers, standardizing documentation, and designating clinic champions are promising methods of improving EHR documentation of FC status. Identifying and documenting FC status are important initial steps to optimizing care for this vulnerable population in primary care.

Caring for Hospitalized Children in Foster Care: Provider Training, Preparedness, and Practice.

BACKGROUND AND OBJECTIVES: Children and youth in foster care (CYFC) have high rates of health care utilization, including inpatient care. The objective of this study was to explore the inpatient provider experience caring for CYFC. METHODS: Semistructured interviews were conducted with inpatient pediatric providers from Mid-Atlantic hospitals. Interview questions focused on 3 domains: provider training and preparedness, practice challenges, and strategies to improve care for CYFC. Conventional content analysis was applied to interview transcripts. RESULTS: Thirty-eight interviews were completed with providers from 6 hospitals, including 14 hospitalists, 1 advanced practice provider, 11 registered nurses, 10 social workers (SWs), and 2 case managers. Nearly all (90%) reported at least monthly interactions with CYFC. Themes related to training and preparedness to care for CYFC included: medical providers' lack of formal training, limited foster care knowledge, and feeling of preparedness contingent on access to SWs. Themes related to unique practice challenges included: identifying CYFC, obtaining consent, documenting foster care status, complex team communication, and navigating interpersonal stress. Participants' suggestions for improving their ability to care for CYFC included increasing SW capacity, expanding provider training, standardizing electronic medical record documentation and order sets, and improving team communication and information sharing. CONCLUSIONS: There are unique medical, social, and legal aspects of caring for hospitalized CYFC; pediatric medical providers receive limited training on these topics and rely heavily on SWs to navigate associated practice challenges. Targeted educational and health information technology interventions are needed to help inpatient providers feel better prepared to effectively meet the needs of CYFC.

How Should Clinicians and Health Care Organizations Promote Equity in Child Abuse and Neglect Suspicion, Evaluation, and Reporting?

Victims of child abuse and neglect come from every racial, ethnic, and socioeconomic background, yet clinical evaluation, reporting to child protective services, and responses to reports inequitably harm Black children and malign families of color. Racial bias and inequity in suspicion, reporting, and substantiation of abuse and neglect and in services offered and delivered, foster care placement, and criminal prosecution are widely documented. In response, clinicians and health care organizations should promote equity by educating clinicians about racial bias, standardizing evaluation using clinical decision support tools, and working with policy makers to support prevention services. If we decide that it is ethically justifiable for clinicians to err on the side of overreporting, we must ensure fair distribution of associated benefits and harms among all children and families.

Family challenges in personal transportation of children with medical complexity.

PURPOSE: This study aimed to explore the family experience and associated challenges of transporting children with medical complexity (CMC) in personal vehicles. METHODS: Parents/guardians of CMC in Maryland were recruited to participate in an audiotaped, semi-structured interview. Conventional content analysis was applied to transcripts. RESULTS: Data from 29 participants who indicated use of personal vehicles to transport their CMC were included in the analysis. Transportation challenges were common, and analysis revealed the following themes: 1) challenges transitioning in/out of the vehicle: excess planning time, child factors (e.g., weight), equipment factors (e.g., wheelchair), physical and environmental factors, 2) safety and comfort: CMC positioning/restraints, driver distraction, 3) financial challenges: travel costs related to medical care, accessible modification costs, transportation equipment costs, insurance delays in equipment coverage, 4) adverse family repercussions: parental physical health, isolation, and 5) evolving and unpredictable transportation needs. CONCLUSION: Families with CMC experience multifactorial challenges that impact all phases of travel in personal vehicles and negatively impact child and family safety, access to community and medical care, family finances, and overall well-being. Health care providers can support families by identifying transportation challenges that contribute to health inequities, tailoring solutions to the family's unique needs, and advocating at a policy level to promote change.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

OBJECTIVE: Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. STUDY DESIGN: The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys. RESULTS: Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: "We are drowning"; and "We'll never pay it off." CONCLUSION: Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity. KEY POINTS: · Many families want to discuss costs with NICU clinicians.. · Some families want costs to be a part of medical decisions.. · Few families currently discuss costs with NICU providers..

Delays in Hospital Discharge for Children in Foster Care: Reasons and Recommendations From a Multisite Study.

OBJECTIVE: To elucidate challenges to timely hospital discharge of children in foster care (CFC). METHODS: Inpatient providers with prior experience caring for CFC were recruited from 6 mid-Atlantic hospitals. Semi-structured interviews were conducted to explore provider experience discharging CFC. Conventional content analysis was applied to interview transcripts with Dedoose software. RESULTS: Interviews were completed with 15 MDs/NPs, 11 RNs, 10 social workers, and 2 case managers. Participants explained that delayed discharge is the norm for CFC, especially for those entering new foster care placements. Participants detailed challenges to efficiently discharging CFC, which were categorized into 3 themes: 1) Waiting for discharge disposition: Providers' ability to proceed with discharge planning is contingent on procedural steps (eg, court decisions) needed to determine disposition (eg, entering new foster care placement); 2) Medically cleared, but no place to go: Participants report placement searches are often not initiated by child welfare until the child is medically cleared. Lack of available, appropriate foster care placements delays discharge, particularly for children with complex medical or behavioral diagnoses; 3) Coordinating for a safe discharge: Establishing a safe discharge for CFC involves meticulous discharge planning, foster parent training, and multidisciplinary team communication/coordination. CONCLUSION: Delayed discharge for CFC is multifactorial, yet often predictable. There are modifiable factors identified that can be addressed to promote timely hospital discharge and prevent medically unnecessary hospital days, benefitting patients in foster care and the hospital system.

Effects of Child Protective Custody Status and Health Risk Behaviors on Health Care Use Among Adolescents.

OBJECTIVE: To determine whether current protective custody status (ie, youth currently in the temporary or permanent custody of child protective services, eg, foster and kinship care) contributes to increased health care utilization compared to youth never in protective custody. Health characteristics (eg, mental health diagnoses) and behaviors (eg, substance use) were expected to account for differences in health care use among the two groups. METHODS: Retrospective child welfare administrative data and linked electronic health records data were collected from a county's child welfare system and affiliated freestanding children's hospital between 2012 and 2017. Youth currently in protective custody (n = 2787) were identified and demographically matched to peers never in custody (n = 2787) who received health care from the same children's hospital. Health care use, health risk behaviors, and social, demographic, and diagnostic data were extracted and compared for both cohorts. RESULTS: In baseline models, health care use was higher for youth in protective custody compared to peers. In adjusted models that included health risk behaviors and patient characteristics, protective custody status was associated with decreased primary and missed care, and no longer a significant predictor of other types of health care use. CONCLUSIONS: Youth had significantly higher utilization while in protective custody than their demographically similar peers; however, health risk behaviors appear to account for most group differences. Identification of current custody status in pediatric settings and addressing health risk behaviors in this population may be important for health care systems interested in altering health care use and/or cost for this population.

Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity.

OBJECTIVE: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). METHODS: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. RESULTS: Fifty-eight interviews were completed with 2-5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. CONCLUSIONS: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.

Exploring Medical Foster Care as a Placement Option for Children With Medical Complexity.

BACKGROUND: Medical foster care (MFC) offers a family-home setting for children with medical complexity (CMC) who cannot be cared for by their parents. We explored MFC as a placement option for CMC via in-depth interviews with the individuals providing and monitoring care. METHODS: In collaboration with an MFC agency, we recruited care team members for 15 CMC. Semistructured interviews were audiotaped and transcribed. Descriptive analyses were performed on care team composition and roles, the placement process, and child medical, placement, and quality of life (QoL) characteristics. Foster parents completed child QoL questionnaires. Conventional content analysis was applied to participant suggestions for MFC improvements. RESULTS: Fifty-eight interviews were conducted; a median of 4 care team members interviewed per child. An extensive network of individuals and systems are involved in providing care. Each child received care from multiple subspecialists (median = 5). Most children were technology dependent (87%), developmentally delayed (87%), and entered MFC from the hospital (73%) because of medical neglect (86%). Nearly half were in care for >2 years. Changes in placement and/or care team were common. QoL scoring showed impairments in multiple domains, whereas respondent interviews described positive aspects of QoL. Participants provided suggestions to improve care within MFC. CONCLUSIONS: MFC is a promising placement option for CMC. Because many CMC are entering MFC directly from the hospital and require ongoing care from pediatric subspecialists, pediatricians should be familiar with MFC, the placement process, and the various systems and individuals involved. Pediatricians can play important roles in ensuring that children in MFC receive coordinated and high-quality care.

Child Abuse, Incarceration, and Decisions About Life-sustaining Treatment.

Most critical care interventions for children occur in the framework of a supportive environment with loving parents that are present at the bedside to help to guide medical interventions through shared decision-making. What happens, however, if the parents are precluded from being at the bedside because of legal entanglements? How should clinical decisions progress in those cases? In this Ethics Rounds, we present the case of an infant with severe hypoxic-ischemic encephalopathy at birth whose mother was incarcerated shortly after delivery. We explore clinical and legal challenges that the medical team faces in determining best interests for the infant in this context and difficulties in deciding what therapies to provide and for how long.

Medically Complex Children in Foster Care: Do Research "Protections" Make This "Vulnerable Population" More Vulnerable?

Children in foster care are considered a "vulnerable population" in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the "vulnerable population" designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine "protection" of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research.