The Medical Home and Mental Health Services in Children and Youth with Special Health Care Needs.

BACKGROUND AND OBJECTIVES: Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN. METHODS: Data came from the Medical Expenditure Panel Survey years 2015-2017, a nationally representative survey of health and healthcare in US families. The study included CYSHCN ages 6-17. We compared the use of mental health services, expenditures, and psychotropic medications across CYSHCN with and without a medical home using multivariable regression. RESULTS: 45% of CYSHCN received care within a medical home. CYSHCN with and without a medical home reported similar frequency of office-based mental health visits (21.2% versus 25.2%), average expenditures for visits ($147 versus $128), and psychotropic medications (11.9% versus 15.1%). Medical home status was not associated with office-based mental health visits, use of psychotropic medications, or cost for either. CONCLUSIONS: CYSHCN with mental health care needs face barriers to satisfactory care. Creating better connections between primary and mental health care could help to ameliorate this problem. Findings suggest the medical home, a more comprehensive primary care model, may not address mental health care needs of CYSHCN.

The Critical Value of Maternal and Child Health (MCH) to Graduate Training in Public Health: A Framework to Guide Education, Research and Practice.

INTRODUCTION: In light of persistent health inequities, this commentary describes the critical role of maternal and child health (MCH) graduate training in schools and programs of public health (SPPH) and illustrates linkages between key components of MCH pedagogy and practice to 2021 CEPH competencies. METHODS: In 2018, a small working group of faculty from the HRSA/MCHB-funded Centers of Excellence (COEs) was convened to define the unique contributions of MCH to SPPH and to develop a framework using an iterative and consensus-driven process. The working group met 5 times and feedback was integrated from the broader faculty across the 13 COEs. The framework was further revised based on input from the MCHB/HRSA-funded MCH Public Health Catalyst Programs and was presented to senior MCHB leaders in October 2019. RESULTS: We developed a framework that underscores the critical value of MCH to graduate training in public health and the alignment of core MCH training components with CEPH competencies, which are required of all SPPH for accreditation. This framework illustrates MCH contributions in education, research and evaluation, and practice, and underscores their collective foundation in the life course approach. CONCLUSIONS: This new framework aims to enhance training for the next generation of public health leaders. It is intended to guide new, emerging, and expanding SPPH that may currently offer little or no MCH content. The framework invites further iteration, adaptation and customization to the range of diverse and emerging public health programs across the nation.

Developing a Public Health Maternal and Child Health Training Program: Lessons Learned from Five Schools of Public Health.

Maternal and child health (MCH), as a core sub-field of public health, continues to be an essential area in which additional workforce development and investment are needed. Recent public health workforce assessments in the United States reveal there will be a significant number of vacancies in MCH public health positions in the near future, creating the need for a well-trained and skilled public health MCH workforce. In order to address this potential critical workforce gap, the U.S. Department of Health and Human Services, Health Resources and Services Administration's Maternal and Child Health Bureau initiated the Maternal and Child Health Public Health Catalyst Program in 2015 to support the creation of MCH training programs in accredited schools of public health that previously did not have a MCH concentration. This article details the accomplishments and lessons learned from the first five MCH Catalyst Program grantees: Drexel University; Florida International University; Rutgers, The State University of New Jersey; Texas A&M University; and the University at Albany.

Catch it before it breaks!: managing metabolic bone disease of prematurity.

PURPOSE OF REVIEW: Metabolic bone disease of prematurity, commonly referred to as osteopenia of prematurity, remains prevalent in the neonatal intensive care unit (NICU) despite recent medical advances. It is estimated that up to 60% of extreme low birth weight and 20% of very low-birth-weight infants have metabolic bone disease of prematurity. Often silent, it typically presents with poor growth, increased ventilator dependency and fractures. Clinical sequalae, such as short stature can extend into young adulthood. There is no universal consensus by neonatal intensive care unit clinicians on the screening, diagnosis, or treatment for metabolic bone disease of prematurity. The disease is often diagnosed late by radiographs or incidentally in this highly fragile population. RECENT FINDINGS: Suggest screening using DEXA (dual-energy X-ray absorptiometry) scans or ultrasound, in combination with serum markers like alkaline phosphatase, phosphorous levels, parathyroid hormone, and tubular reabsorption of phosphate, might identify at-risk babies earlier. The use of protocol-based screenings may aid in early diagnosis. SUMMARY: We present a review of the risk factors, recent screening methods, diagnosis and management of this prevalent, clinically relevant diagnosis, as well as propose a protocol for the early screening and management of this silent disease.

Maternal postpartum depression: risk factors, impacts, and interventions for the NICU and beyond.

PURPOSE OF REVIEW: Postpartum depression (PPD) negatively impacts caregivers, infants, siblings, and entire families. Mothers with infants admitted to the neonatal intensive care unit (NICU) face additional risk for PPD, coupled with risk factors extending beyond a NICU admision. The novelty of this review is the focus on maternal PPD for mothers with infants admitted to the NICU. Interventions aimed at limiting and preventing PPD in this population include: prenatal and postpartum depression screening, PPD symptom awareness and monitoring, and trauma-informed care. RECENT FINDINGS: PPD, the most frequent complication of childbirth, affects approximately 10-15% of mothers worldwide. Prevalence rates increase to 40% for mothers whose infant is admitted to the NICU. PPD can affect maternal and child health across the life course and predispose future generations to a myriad of developmental, psychosocial, and physical challenges. Prevalence rates are higher for racial and ethnic minorities, immigrant and refugee populations, and mothers in rural locations. Trauma-informed care is suggested at individual and organizational levels, leading to better care for those with and without previous trauma exposure. SUMMARY: Increasing PPD symptom awareness, screening for PPD, and connections with resources should begin during prenatal visits. Care teams should discuss barriers to resources for mothers, children, and families to improve access and support.

'It's common sense that an individual must eat': Advocating for food justice with people with psychiatric disabilities through photovoice.

BACKGROUND: People with SMI have often been excluded in advocacy efforts focused on physical health, health care and health and social policy. OBJECTIVE: Following a Photovoice project focused on barriers to healthy eating and physical activity in urban neighbourhoods, participant-researchers were invited to present their insights in community advocacy settings. The purpose of this study was to explore the feasibility and participant-researchers' experience of these community advocacy activities. DESIGN: We held four focus groups with the eight participant-researchers after each community advocacy activity to explore their experience with public speaking, presenting their experiences and advocating. SETTING AND PARTICIPANTS: People with serious mental illness who were overweight/obese living in supportive housing. ANALYSIS APPROACH: Qualitative analysis of the focus group transcripts, using a modified grounded theory approach followed by structured coding focused on empowerment, participation and non-discrimination. RESULTS: Participant-researchers gave three oral presentations of their photographs at a variety of community-based programmes and settings and participated in a rally to advocate for SNAP benefits. Two themes emerged from analysis: (a) Empowerment (the level of choice, influence and control that users of mental health services can exercise over events in their lives) and (b) Barriers to Empowerment (obstacles to participation and well-being). CONCLUSIONS: This evaluation strengthens the evidence that it is feasible for participant-researchers in Photovoice projects to engage in robust advocacy activities, such as presentations and discussions with local policymakers. During focus groups, participant-researchers demonstrated realistic optimism towards their roles as change agents and influencers in spite of acknowledged systemic barriers.

Health Service and Functional Measures of Benefit of a Medical Home in Children with Autism.

OBJECTIVES: A medical home is a model of patient-centered, comprehensive care recommended by the American Academy of Pediatrics for all children. The aims of this study were (1) to determine if the presence of a medical home is associated with improved health service outcomes of children with autism, and (2) to determine if the presence of a medical home is associated with improved key functional outcomes in children with autism. METHODS: This study used data from the 2016-2017 National Survey of Children's Health. We used a medical home construct of 14 survey questions as the main independent variable in logistic regression models estimating cross-sectional association, and also evaluated the interaction between medical home and demographic and household characteristics, including race, income, household composition, and autism severity in regression for outcomes. RESULTS: Overall, the presence of a medical home was associated with increased parent reporting of shared health care decision-making, receipt of preventive pediatric care, and reduced frustration in accessing services. Some functional outcomes were also positively associated with the presences of a medical home in children with parent-reported mild autism symptoms; children who had a medical home visited the ED less often than children without a medical home. This did not persist for children with moderate or severe parent-rated autism. CONCLUSIONS FOR PRACTICE: Based on parent-reported, cross-sectional data from a large, nationally representative sample of families with a child with autism, the presence of a medical home was positively associated with some improved health services and functional outcomes.

Unmet Needs of Male Caregivers of Children and Youth with Special Health Care Needs.

OBJECTIVES: The caregiving experiences and unique health needs of male caregivers of children and youth with special health care needs (CYSHCN) are not well described. This study seeks to understand potential unmet health needs and attitudes toward supportive resources from the perspective of a sample of male caregivers of CYSHCN. METHODS: This mixed-methods study recruited a convenience sample of 30 men with CYSHCN who receive care for a chronic medical condition from primary care medical homes in Pennsylvania. We conducted semi-structured interviews (SSI), administered quantitative surveys to caregivers, and produced a thematic analysis. The SSI explored the health needs of male caregivers, assessed attitudes toward and preferences regarding supportive resources, and garnered their advice to other caregivers regarding parenting and health care system navigation. RESULTS: Participants' median age is 41 years (IQR: 33, 44), and most (80%) reside full time with their CYSHCN. Most male caregivers deprioritized their own emotional, mental, and physical health needs to support the needs of their families. Many male caregivers articulated interest in seeking emotionally supportive resources (not time-intensive). They advised other male caregivers to remain involved in the medical care and wellbeing of their CYSCHN and to openly seek and receive emotional support despite the daily challenges they face. CONCLUSIONS FOR PRACTICE: Male caregivers of CYSHCN experience intense daily stress and express the need for emotionally supportive resources. Programs designed to facilitate such support may benefit from flexible formats (time and location) and involve male caregivers of CYSHCN as both facilitators and participants.

Community health workers: improving population health through integration into healthcare systems.

PURPOSE OF REVIEW: The purpose of this review is to describe the role, responsibilities, hiring, training, and retention of community health workers (CHWs) on clinical care teams in the United States. RECENT FINDINGS: CHWs are unique members of clinical care teams because of their ability to foster a deep trust and understanding with patients by sharing similar life experiences, participating in home visits, and providing constant support and advocacy. By partnering with CHWs, other clinical care members also gain a better understanding of their patients allowing them to deliver more culturally competent, patient/family-centered care. CHWs when incorporated into interdisciplinary teams have shown to lower healthcare costs, reduce hospital stays and admissions, and improve health outcomes and quality of life for children and families. However, the lack of standardization among CHW programs makes it difficult to quantify the overall effect and impact of integrating CHWs into clinical care teams. SUMMARY: CHWs are able to improve health outcomes and address social determinants of health when properly integrated into clinical care teams. However, without adequate support, integration, funding, and training, CHWs are not able to reach their full potential. The standardization of CHWs' responsibilities and training, like other clinical care team members, is lacking within the United States, making it a challenge to evaluate programs and maintain sustainable funding for these vital members of the clinical care team.

Development of a Multidisciplinary Medical Home Program for NICU Graduates.

OBJECTIVE: Typical primary care practices are often not equipped to meet the medical, developmental or social needs of infants discharged from a neonatal intensive care unit (NICU). These needs are exacerbated for infants and caregivers residing in poverty. This article discusses a multidisciplinary, family-centered medical home designed to address the needs of this special population. METHODS: This is a descriptive analysis of a cohort of patients in the Next Steps Program (NSP), a multidisciplinary primary care medical home. Key program elements include: continuity of care from the NICU to primary care, routine developmental surveillance, care coordination, and proactive screening to address medical and social needs. RESULTS: The NSP has become a primary referral source for local NICUs, with a total of 549 medically fragile infants enrolled from its inception in 2011 through 2016. Caregivers and patients experience psychosocial stressors at averages statistically significantly higher than the rest of the Commonwealth of Pennsylvania and the US. Although patients in the program use medical resources beyond that of typically developing infants, hospital utilization among this patient cohort is trending down. DISCUSSION: Caring for medically fragile NICU graduates can be daunting for families given the array of necessary services, supports, and resources to maximize their potential. A multidisciplinary primary care medical home, such as the NSP, is a successful model of patient care demonstrating favorable associations with health care utilization, care coordination, and addressing/improving family functioning and their experience.

Clearing the air: adolescent smoking trends.

PURPOSE OF REVIEW: The purpose of this review is to highlight the emerging smoking behaviors and varied tobacco products elevating public health concerns related to the exposure of these potentially harmful substances in the adolescent population. RECENT FINDINGS: Although adolescent smoking of traditional cigarettes has declined in the last 40 years, the inhalation of other nicotine-containing products using alternative methods and devices, such as smoking electronic cigarettes, using hookahs, vaping, and JUULing are dramatically on the rise in the adolescent population. Regardless of the novel delivery devices or methods, use of nicotine-containing products in any form is hazardous and unsafe. SUMMARY: If adolescent smoking trends continue at the current rate in the United States, 5.6 million of today's American youth under the age of 18 will die early from a smoking-related illness. With the emerging high-risk smoking behaviors resulting in detrimental exposure to nicotine and other harmful substances available to adolescents, pediatric healthcare providers will have an increasing responsibility to screen, to manage, and to educate patients and families to combat this imminent threat to the public health of our next generation.

The medical home for children with autism spectrum disorder: an essential element whose time has come.

PURPOSE OF REVIEW: The purpose of this review is to describe the role of the medical home in children with autism spectrum disorder (ASD). A high-quality medical home is essential, given the increase in prevalence of ASD and the array of services, community partners, specialists, therapists, and healthcare team members needed to care for this population. RECENT FINDINGS: Providing care through the medical home model results in fewer unmet needs. Care coordination and integration are the aspects of the medical home currently most lacking. Navigating the healthcare landscape for children with ASD may be enhanced with patient navigators, integration of physical and behavioral health, and telehealth services. SUMMARY: Children with ASD have an increased number of medical and mental health needs. Obtaining care via a medical home has been shown to decrease unmet healthcare needs. However, they are less likely to receive care through the medical home model compared with other children with special healthcare needs. Barriers identified by families include a lack of early identification, limited knowledge on educational plans, and unknown community resources. Barriers identified by providers include lack of time, training, and resources. Providing care coordination and family-centered care in a medical home model are essential for children with ASD.

Relationship-focused vs. Structural Activities in Medical Home Measurement in Pediatrics.

Objectives The Family-Centered Medical Home (FCMH) has become a model of effective and efficient primary care. However, efforts to measure the FCMH may ignore its complexity. We sought to determine whether U.S. primary care pediatricians view structure-focused and relationship-focused practice activities of the FCMH as distinct constructs and how these constructs are associated with practice functions. Methods We analyzed data from the 2012 American Academy of Pediatrics Periodic Survey of Fellows #79 (n = 572) addressing opinions and practice activities related to the FCMH. Through a modified Delphi expert process, we selected items believed to be primarily structure-focused and items that were relationship-focused. Confirmatory factor analysis was used to test whether these constructs were distinct. Separate structural equation models assessed whether structure-focused and relationship-focused activities predicted three broader survey items: (1) interest in FCMH; (2) application for FCMH recognition; and (3) whether a team meets to discuss FCMH improvements. Results The initial two-factor model did not fit well, but improved with movement of two items from the structure to the relationship-focused group. The two factors correlated at r = 0.70. Respondents with increased relationship-focused activities had statistically higher odds of having medium/high interest in FCMH, and having a team meet to discuss FCMH improvements. Respondents with increased structure-focused activities also had higher odds of having team meetings to discuss FCMH improvements, but lower odds of applying for FCMH recognition. Conclusions for Practice The FCMH is multi-dimensional, with relationship- and structure-focused activities differentially linked to pediatrician reports of broader FCMH functions.

Vaccine Hesitancy in Pediatric Primary Care Practices.

Understanding how pediatric practices handle parental vaccine hesitancy is important as it impacts the efficiency and effectiveness of pediatric practices. In total, 21 semi-structured interviews with pediatric practice staff within a primary care network were conducted between May 2012 and March 2013. Thematic analysis focused on the barriers and challenges of vaccine hesitancy and strategies to reduce the burden at the practice level. Barriers and challenges of vaccine hesitancy included time constraints, administrative challenges, financial challenges and strained patient-provider relationships. Strategies to minimize the burden of vaccine hesitancy included training for vaccine counseling, screening for vaccine hesitancy prior to immunization visits, tailored vaccine counseling, and primary care provider visits for follow-up immunization. Pediatric practices reported many challenges when caring for vaccine-hesitant families. Multiple strategies were identified to reduce the burden of vaccine hesitancy, which future studies should explore to determine how effective they are in increasing vaccine acceptance in pediatric practices.

A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home".

BACKGROUND: Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup, as part of the Society of General Internal Medicine's 2013 Research Conference. OBJECTIVE: To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. METHODS: We conducted a narrative review of relevant articles published from 2000 to 2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. RESULTS: Despite the theoretical importance of PFE and policy recommendations that PFE occurs at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. CONCLUSIONS: Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high-quality health care and optimize outcomes.

Evaluation of a statewide medical home program on children and young adults with asthma.

OBJECTIVE: Asthma, the most common chronic condition among children, accounts for significant healthcare utilization and impact on quality of life. Care coordination in a medical home is considered standard practice, but has not been rigorously evaluated. METHODS: We initiated this pilot study of children/young adults with asthma (n = 967), ages: birth to 24 years, receiving care from a subset of pediatric practices (n = 20) participating in the Pennsylvania Medical Home Initiative, Educating Practices in Community-Integrated Care (92 practices statewide). We hypothesized children and youth with asthma receiving care coordination in the context of a formal medical home program would experience favorable associations with healthcare utilization and quality of life measures. RESULTS: A total of 9240 care coordination encounters for this cohort of children/youth occurred over 100 days. The average length of care coordination encounter was 20.7 minutes. The most common care coordination activity was referral management (21%) and the care coordinator in the practice most often contacted parent/family and specialists (75%). Children with more severe asthma had more hospitalizations and emergency department (ED) visits than children with less severe asthma. There was a significant decrease in school absences, ED visits and acute care visits for children/youth with asthma with increasing length of time in a medical home program (p < 0.05). CONCLUSION: Care coordination for children/youth with asthma is feasible and may yield improvements in healthcare utilization, expenditures and quality of life. Larger-scale implementation of care coordination and medical home models for children/youth with asthma and other diagnoses are warranted.

Obesity and children with special healthcare needs: special considerations for a special population.

PURPOSE OF REVIEW: The high prevalence of childhood obesity continues to persist, especially in children and youth with special healthcare needs (CYSHCN). The International Classification of Functioning, Disability, and Health model and the American Academy of Pediatrics recommendations are appropriate frameworks related to increasing physical activity and healthy eating habits among CYSHCN. This review aims to provide pediatric providers with recommendations in the assessment, treatment, and management of obesity in CYSHCN. RECENT FINDINGS: Personal, environmental, and parental factors contribute to participation of CYSHCN in physical activity and consumption of healthy foods. Findings demonstrate that physical activity among CYSHCN is possible with proper guidance and supervision from families, healthcare providers, and community recreation staff. Proper direction from parents can help CYSHCN with food restrictions consume healthier food options. Creative solutions for promoting physical activity and healthy foods are vital for this special population. SUMMARY: Promoting healthy weight and addressing health behaviors can contribute to favorable health outcomes and quality of life in CYSHCN. Pediatricians are encouraged to assess risks contributing to obesity in collaboration with families and interdisciplinary teams (specialists, psychologists, primary care providers, mental health professionals, social workers, physical therapists, and dieticians), providing their patients (CYSHCN) with essential skills and resources to prevent and manage obesity.

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.

A Virtual Home Preparedness Intervention Centered on Children and Youth With Special Health Care Needs.

OBJECTIVE: Children and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network. METHODS: The VHPI comprised (1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth's care needs; (2) a resource packet containing emergency planning templates and information on local supports; and (3) individualized referrals coordinated through the medical home/community partners. Eligible CYSHCN had medical technology reliance, physical/mobility needs, communication/intellectual challenges, and/or vision/hearing loss. Preparedness was measured as pre/post affirmed rates of 19 items from the interview and as mean composite scores of these items; associations were evaluated using generalized estimating equations-based regression for repeated measures. RESULTS: The pre- and post-VHPI interviews were completed by 170 and 148 participants, respectively. Significant individual-item gains included having a current Emergency Information Form for the child/youth (31% [pre] to 47% [post] affirmed) and assembling an evacuation kit (50% to 68%). The mean preparedness score was 13.33/19 items affirmed at baseline and increased to 14.96 post-VHPI (p < 0.0001). In the adjusted regression model, the post-intervention preparedness score remained significantly higher than pre-VHPI, with mean increases of 1.22 preparedness steps affirmed for homeowners and 1.85 for renters. CONCLUSIONS: Preparedness scores improved post-VHPI in families with CYSHCN. Future work should address incorporating the VHPI into care visits in the medical home. WHAT'S NEW: A virtual home preparedness intervention-comprising a pre/post interview, resources for preparedness and social needs, and individualized medical/community referrals-improved metrics of emergency preparedness in a statewide, medical home-connected sample of families with children/youth with special health care needs.

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.