IMPLEMENTING NATIONAL POLICY: FROM BIRTH TO END OF LIFE CARING FOR CHILDREN/ADOLESCENTS RHONDA GAY HARTMAN, J.D.

ACA AND HEALTH REFORMS Patient Protection and Affordable Health Care and Education Reconciliation Acts (“ACA”) Expands and extends coverage for children including Medicaid and Children’s Health Insurance Program Together, cover more than one-third of children in the United States Eliminates denials for preexisting conditions, removes annual lifetime caps, allows children to stay on parent’s or guardian’s policy to age 26 Progress in providing for: child-centered care; coverage and coordinated support systems; and goals of comprehensive and continuous care Challenges Ahead: optimize opportunities for children’s health including continuity of care, especially for those most vulnerable; identify and dismantle barriers to quality care, close gaps e.g., fragmentation and regional gaps in healthcare delivery systems for sick children

IMPLEMENTATION AND IMPACT Unprecedented Opportunity for Children’s Health Policy ACA affords opportunity for greater partnerships and interactions among child healthcare professionals, communities, parents, and policymakers: educating/training primary care providers/pediatricians; integrating evidence-based medicine into clinical care; fostering children’s overall health, mental health, and social-emotional health development; monitoring children’s developmental needs and referring for special services; improving care coordination, communication and information sharing in clinical environments; educating and interacting effectively with parents; and communicating, collaborating and coordinating with communities, social and educational systems in which children live

HEALTH REFORM: AMERICAN ACADEMY OF PEDIATRICS Health reforms bolster the AAP’s vision of “Medical Homes” and “Bright Futures” concepts for Children: Medical Homes: community-based system of care that includes families, physicians and interdisciplinary health clinicians, specialists/subspecialists, hospitals, public health agencies and community organizations Bright Futures: guidelines for ensuring quality of care including monitoring and continuity of care, screenings and preventive care, psycho-social and behavioral assessments, mental health

PRESSING CONCERNS Poverty Disparate impact on children of minority communities Children with uninsured, seriously-ill or deceased parents Transitioning Youths e.g., complex/chronic conditions; aging out of foster care Immigrant status

PRIORITIZE YOUTHS MOST VULNERABLE Among the most vulnerable include: Poor Youths with complex and chronic conditions Dependent Youths, aging out of foster care

COMPLEX AND CHRONIC CONDITIONS Challenges for youths who live in poor, minority-based communities: Obtaining continuous access to care when transitioning to adulthood e.g., lack of knowledge about insurance access, limits of living in low-income communities, social-cultural factors Low-income communities: fewer resources for youth development e.g., schools with resources to meet needs, mental health and special education needs Language barriers leading to misunderstandings and gaps in services e.g., using children as interpreters; navigating from familiar pediatric systems to unfamiliar adult systems; interacting with people beyond providers Lower educational attainment, translating into difficulties when interpreting and responding to information and resulting in gaps in care Beliefs and attitudes, future options and expectations affecting goal setting and decision making Sense of trust: relationships with adult-oriented providers take longer, can result in needed follow-up care

TRANSITIONING YOUTHS: FOSTER CARE ACA: makes adolescents aging out of foster care eligible for Medicaid coverage until age 26, regardless of income Fostering Connections to Success and Increasing Adoptions Act: requires states to work with youth to develop transition plan that addresses such issues as health insurance requires states to develop, in coordination with state Medicaid agency and in consultation with pediatricians/experts, a plan for ongoing oversight/coordination of health care services including continuity and oversight of medications for each child Pediatricians’ Vital Roles: work collaboratively with child welfare agencies to identify and ensure that ongoing health needs of transitioning youths are met

TRANSITIONING YOUTHS FROM FOSTER CARE Critical and unique needs: Higher rates of medical and mental health challenges often consequence of circumstances that led to foster care or exacerbated by experience of foster care include developmental delays, emotional adjustment problems, chronic medical and behavior/mental problems, birth defects, substance abuse, pregnancy large number of adolescents are coping with mental health issues including posttraumatic stress disorder many have a chronic illness or disability Transition plans should address: Housing, health insurance, mentoring, support services including arrangement for enrolling in Medicaid to maintain “medical home” and continuity of care

OTHER AREAS MERITING ATTENTION Consistent care and providers; pediatric training for child-centered care Regulatory gaps/conflicts Confidentiality Research Serious Illness and end-of-life care: Inclusion of minors in decision making (e.g., NY) Oversight Committees Preferences/Directives Palliative Care/Pain Relief Fertility Preservation Personalized/Genetic Medicine (e.g., decision making, incidental findings, data/records)

PUBLIC HEALTH: CHILDREN AND ADOLESCENTS Issues for Public Health: Defining “public health” issues and state interventions Tensions among state, parents, minors and healthcare providers’ professional roles Vaccinations generally or HPV Physical health (e.g., firearms) Psychological health (e.g., maltreatment) Role of state, public schools (e.g., obesity, diet) Role of poverty and impact on children Risk exposure with questionable benefit e.g., research inclusion, living donation