February-March 2020

Important COVID-19 Update

Greetings NRC-PFCMH stakeholders,

As the coronavirus pandemic evolves, the National Resource Center for Patient/Family-Centered Medical Home at the American Academy of Pediatrics (AAP) is continuing regular business operations to support medical home implementation and systems building efforts for children and youth with special health care needs. As usual, our team is available to answer your medical home questions and provide ongoing technical assistance and training. For technical assistance requests, please contact us at medical_home@aap.org.

For guidance and information about responding to the coronavirus, please see the following resources from the AAP and partner agencies.
COVID-19 resources and updates for health care professionals
We at AAP are working to stay abreast of all confirmed developments related to COVID-19. Below are some resources to help you access information on COVID-19 as quickly as possible.
The AAP has established a new web page on AAP.org where you can find the latest clinical guidance, recommendations from the Centers for Disease Control and Prevention (CDC), and other resources. This page will be updated daily as new information is available.
CDC: COVID-19 information for health care professionals
World Health Organization: Coronavirus
COVID-19 resources for families
HealthyChildren.org: 2019 Novel Coronavirus (COVID-19)
HealthyChildren.org: COVID-19: Information for Families of Children and Youth with Special Health Care Needs

Bi-Monthly e-Newsletter
Implementation Resources from the National Resource Center for Patient/Family-Centered Medical Home

Identification and Screening of Social Determinants of Health Among Children with Special Health Care Needs in Medicaid 
Developed by the National Resource Center for Patient/Family-Centered Medical Home in partnership with the National Academy for State Health Policy, this fact sheet highlights how state Medicaid agencies are working to incorporate social determinants of health (SDoH) screenings into their programs to improve health outcomes for children and youth with special health care needs (CYSHCN). Opportunities for collaboration and partnership between Medicaid, Title V Maternal and Child Health / CYSHCN programs, and pediatricians are discussed. State-level case studies provide innovative, replicable strategies for implementing SDoH screening.
Care Coordination in the Community 
Developed in partnership with the Center for Children and Youth with Special Health Care Needs at St Christopher's Hospital for Children and the National Center for Care Coordination Technical Assistance, this profile highlights the Medical-Legal Partnership program at an urban primary care practice in Philadelphia, Pennsylvania. The Medical-Legal Partnership is a program in which attorneys are available onsite at the primary care practice to provide families with legal services. This profile provides lessons learned and strategies for building inhouse resources in clinics to address social determinants of health, including legal challenges facing families. Care coordination tools and resources that support this work include the Care Coordination Measurement Tool and the Pediatric Integrated Care Survey.
Recommendations for Payers on Financing the Medical Home
The recent American Academy of Pediatrics policy statement, “Principles of Financing the Medical Home for Children," includes recommendations targeting payers. These recommendations are highlighted in the AAP News article: "Proper financing of medical home for children necessary for quality care" and state:

A policy of providing first dollar coverage for preventive services recommended in Bright Futures, basing deductibles and copays on household income not as absolute dollar amounts, and recognizing that high-deductible plans are not appropriate for children.

A uniform definition of medical necessity among payers. Medically necessary services include those important for optimal growth and development, and treat the full range of pediatric conditions in accord with evidence-based science or evidence-informed expert opinion.
Payment models that strengthen the patient/family-physician relationship and do not impose administrative burdens that detract from medical home care.
Procedures enabling both the pediatrician and family to learn the extent of a patient's coverage for services at the time and place of service.
Payers should not make it easier for families to go to facilities that lack fundamental pediatric expertise, fail to coordinate with the medical home or do not practice antibiotic stewardship.

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Additional Implementation Resources

New Online Course: Health Care Transition for Adolescents and Young Adults
Got Transition is now offering an online Continuing Medicine Education (CME) course presenting a review of updated clinical recommendations on health care transition and the tested quality improvement approach – the Six Core Elements of Health Care Transition. The 1-hour module, "Health Care Transition for Adolescents and Young Adults" is designed for pediatric and adult primary and specialty care physicians, nurses, and social workers. Jointly sponsored by Health Services for Children with Special Needs, Inc., The National Alliance to Advance Adolescent Health, and DC Health, this online CME course is free.

Incorporating Pediatric-To-Adult Transition into National Committee for Quality Assurance Patient-Centered Medical Home Recognition
Presented by Got Transition, this resource links the National Committee for Quality Assurance Patient-Centered Medical Home recognition standards with specific tools and resources from Got Transition which can be used to implement the Six Core Elements of transition.
New Report: The Progression of Health Care Transition Implementation in State Title V Maternal and Child Health (MCH)/ Children and Youth with Special Health Care Needs (CYSHCN) Programs Care Coordination Programs from 2017 to 2019
This report from Got Transition summarized results from a survey to assess state Title V MCH / CYSHCN care coordination programs' implementation of Got Transition's Six Core Elements of Health Care Transition tools. The report reviews trends from 2017-2019 and offers suggestions for improving health care transition. Data from report can be used by state Title V MCH/CYSHCN programs in their annual block grant applications.
New Resources: Family Engagement in Systems Assessment Tool and Family Engagement in Systems Toolkit
Family participation is essential for creating the policies and programs that shape the services children and families receive. Family Voices, with support from the Lucile Packard Foundation for Children's Health, has created the Family Engagement in Systems Assessment Tool (FESAT) and Family Engagement in Systems (FES) Toolkit. Organizations can use the tool and toolkit to assess how well they engage families, improve family engagement over time, and guide the design of systems-level activities to ensure family engagement.

Standards for Compensation of Family Partners in Research
The Children and Youth with Special Health Care Needs Research Network (CYSHCNet), a national research network supported by the US Maternal and Child Health Bureau, developed a standard of compensation for youth and family partners who participate on a research team. The publication outlines roles, responsibilities, and different types of supports and compensation for family members. A companion standard of compensation for research teams describes how researchers can identify, orient, support, and compensate families and youth. The American Academy of Pediatrics is represented on the steering committee of the CYSHCNet and was involved in the review of this publication.

New Model Pharmacy Benefit Managers Contract Helps States Save on Prescription Costs
As major drug purchasers, states can leverage their buying power by demanding favorable contract terms with pharmacy benefit managers (PBMs). A new National Academy for State Health Policy (NASHP) resource – Model PBM Contract Terms – offers specific language that states can use in their negotiations to achieve savings. This blog post highlights the terms of the model contract.

Data Sets and Codebooks Available for National Survey of Children's Health
The Data Resource Center has released the combined 2017-2018 National Survey of Children's Health data sets and codebooks. The multi-year data set includes data from 52,129 children ages 0-17 years. Increased sampling over multiple years has allowed for more reliable national and state-level estimates, particularly for measures that are restricted to certain age ranges or subgroups, including children with special health care needs.

Conferences, e-Learning, and Events

From Awareness to Action: Strategies for Combating Racism in Health Systems
Racism continues to adversely affect the health of families across the country, illustrating an urgent need for change. In response, the National Institute for Children's Health Quality (NICHQ) hosted a webinar focused on helping individuals address racism in public health and health care programs. After watching this recorded webinar, participants will be able to understand and contextualize the three levels of racism: internalize; interpersonal; and institutionalized/structural racism. Participants will learn to apply a racial equity lens to collective impact-based health improvement initiatives using 6 guiding questions. Participants will also learn how to identify key strategies for designing intentional, action-oriented, and strengths-based approaches to start and sustain an equity-focused organizational culture shift.
American Academy of Pediatrics Spina Bifida Webinar Series
Spina bifida is the most commonly occurring complex congenital birth defect and has been associated with increasing survival rates. This free webinar series from the American Academy of Pediatrics addresses important care guidelines, and highlights the critical role of pediatricians, subspecialists and other clinicians in caring for individuals with spina bifida. Each of the webinar modules are eligible for AMA PRA Category 1 Credit™ and Maintenance of Certification (MOC) Part 2.
New Online Course—Milestones Matter: Don’t Underestimate Developmental Surveillance
Presented by the American Academy of Pediatrics, this free online PediaLink course highlights the importance of developmental surveillance as an essential component of the new recommendations in the clinical report titled, “Promoting Optimal Development: Identifying Infants and Young Children with Developmental Disorders Through Developmental Surveillance and Screening." This course will help with recognizing the value of early identification and intervention when developmental delays are suspected, and to identify the key surveillance and screening steps to incorporate into practice. Participants are eligible for 1 American Medical Association Physician's Recognition Award (AMA PRA) Category 1 Credit™ and 1 Maintenance of Certification (MOC) Part 2 points.

Partners and National Initiatives

Funding Opportunity: Outcomes and Developmental Data Assistance Center for Early Hearing Detection and Intervention (EHDI) Programs
Applications Due: May 7, 2020
The Centers for Disease Control and Prevention has released a Notice of Funding Opportunity for a new 3-year project called Outcomes and Developmental Data Assistance Center for EHDI Programs. While using intervention and outcomes data can inform decisions and support positive outcomes among children who are deaf or hard of hearing (D/HH), states often lack the capacity to systemically gather these data. The purpose of this notice is to establish and support a new outcomes center to coordinate and assist participating states and strategic partners in determining how best to gather, analyze, and use specific intervention and developmental outcomes data.
Helping States Count All Kids in the Upcoming Census
The Association of Maternal & Child Health Programs (AMCHP) released a package of materials to promote an accurate count of all children in the 2020 United States Census. Census results determine the allocation of billions of dollars in federal funds. It is critical to achieve an accurate count of children so that each state and local communities receive a fair share of funding to support maternal and child health (MCH) populations.

The AMCHP 2020 Census package includes 3 resources:

Counting Kids in the 2020 Census – a fact sheet for MCH programs and advocates
2020 Census Social Media Resource Guide
Parent fact sheet: “Shape Your Children's Future – Include Them in the Census! (English and Spanish)

AAP Voices: Making Sure #EveryChildCounts in the 2020 Census
AAP Voices include blog posts written by Fellows of the American Academy of Pediatrics. A recent blog post explores the importance of all children being counted in the upcoming Census. Children are consistently the most undercounted demographic in the Census, which determines how much funding state and local governments receive for programs aimed at keeping kids healthy. These include Medicaid, the Children's Health Insurance Program, Supplemental Nutrition Assistance Program, and Women, Infants and Children programs, among several others. The blog author encourages health care providers to remind families that for purposes of the Census, households include everyone living there—from newborns to adults.

Key Medicaid Policy Changes: Information from 50 States
Kaiser Family Foundation released a report late last year titled, “A View from the States: Key Medicaid Policy Changes: Results from a 50-State Medicaid Budget Survey for State Fiscal Years (FY) 2019 and 2020." The survey does not attempt to catalog all Medicaid policies in place for each state, but highlights certain policies in place in state Medicaid programs in FY 2019 and policy changes implemented or planned for FY 2020.

Medicaid: What to Watch in 2020
A recent Kaiser Family Foundation Issue Brief, "Medicaid: What to Watch in 2020," outlines key Medicaid issues that will affect health policy in 2020. The issues highlighted in the brief include: Medicaid expansion developments; Section 1115 waiver activity; enrollment and spending trends; benefits, payment and delivery system reforms, and the implications of the 2020 elections.

Policy Statement: 2020 Recommendations for Preventive Health Care
An updated footnote on maternal depression, relating to a recent American Academy of Pediatrics (AAP) policy statement, is the sole change to the 2020 Bright Futures/AAP Recommendations for Preventive Pediatric Health Care (also known as the Periodicity Schedule).

Making Futures Brighter: Improvements in Addressing Social Determinants of Health in Children and Families
A new article, “Making Futures Brighter: Improvements in Addressing Social Determinants of Health in Children and Families" appeared in Pulse: Bi-Monthly Newsletter from the Association of Maternal & Child Health Programs. Written by American Academy of Pediatrics (AAP) Bright Futures National Center staff, the article looks at the field of maternal and child health and significant improvements made in the last decade. Read the article to learn how the AAP and partner organizations have developed policies, guidelines, and resources related to addressing social determinants of health in children.