​Implementation Resources from the National Resource Center for Patient/Family-Centered Medical Home

• New Podcast Series! Gaining Ground: The Primary Care Pediatrician's Role in Public Health Systems of Care for Children and Youth with Special Health Care Needs
  Developed by the National Resource Center for Patient/Family-Centered Medical Home, faculty in this 3-part podcast series discusses real-life examples, strategies, and opportunities to develop partnership between state Title V Maternal and Child Health (MCH) / Children and Youth with Special Health Care Needs (CYSHCN) programs, primary care pediatricians, and families. Faculty provide an overview of the history and current functions of state Title V MCH / CYSHCN programs as well as benefits of multi-disciplinary partnerships. Tools and resources discussed during the series have been compiled and are free and accessible to the public. 
• Create a Customized Care Notebook
  A care notebook can be used to ensure that care is comprehensive, coordinated, and family-centered. The National Resource Center for Patient/Family-Centered Medical Home created a collection of customizable documents—available for free download—that make up a care notebook that reflects each child's medical history and current information.
• Do You Follow Us on Facebook?
  While the National Resource Center for Patient/Family-Centered Medical Home (NRC-PFCMH) bi-monthly e-Newsletter is chock-full of information from the NRC-PFCMH and our partners, the latest implementation information and resources are also shared regularly on our Facebook page. Follow us today!

Additional Implementation Resources 

• 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 Implementation Briefs Developed for MCH Leadership Competencies
  Developed by the National Center for Education in Maternal and Child Health (MCH), the MCH Navigator provides MCH professionals with implementation briefs and other tools and resources to learn about the 12 MCH leadership competencies. The MCH leadership competencies were developed by the Maternal and Child Health Bureau with the goal of creating a strong, systems-thinking MCH workforce. The learning opportunities offered through the MCH Navigator help professionals build confidence in implementation of skills associated with the competencies.
• Transition Tips: Integrating Young Adults with Intellectual and Developmental Disabilities and Autism Spectrum Disorder Into Your Practice
  Got Transition has published 2 new tip sheets with suggestions to help adult health care clinicians successfully integrate young adults with intellectual and developmental disabilities and young adults with Autism Spectrum Disorder into their practices. The suggestions in both tip sheets are consistent with the 2018 American Academy of Pediatrics clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home."
• Toolkit Aims to Help States Boost Successful Transitions for Adolescent
  Got Transition and the Association of Maternal and Child Health Programs have created a toolkit that offers resources to help state Title V Maternal and Child Health / Children and Youth with Special Health Care Needs programs and public health professionals. The toolkit will assist in reaching the goal of ensuring that adolescents with or without special health care needs receive the services necessary to make the transition to adult health care.
• Opportunities for Medicaid to Transform Pediatric Care for Young Children to Promote Health, Development and Health Equity
  Covering nearly one half of young children birth to 5, Medicaid plays a critical role in improving young children's health and developmental outcomes and supporting families. This resource, developed by National Institute for Children's Health Quality, outlines opportunities that provide a common framework for states and their partners—including pediatricians, nonphysician clinicians, other physicians, public health professionals, and advocates—working to improve Medicaid for children. These opportunities can inform and advance state Medicaid policy and implementation efforts designed to improve children's health and developmental outcomes. These opportunities can also support families and contribute to achieving health equity.   

• Be Prepared and Organized for Your Next Clinical Visit!
  Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and members of the school or care team would need to know about your child. For children and youth with special health care needs and their families, a care notebook gives an accurate account of present and past medical history including medications, surgeries, allergies, and more. The Agency for Healthcare Research and Quality created a patient question builder tool to allow patients and families to create a list of questions in preparation for an appointment, which is also available as an app.

• Montana Uses Patient-Centered Medical Homes to Holistically Address Children's Health Needs
  It its State Health Policy Blog, the National Academy for State Health Policy reported that Montana recently expanded its patient-centered medical home (PCMH) program to ensure the needs of children enrolled in its Medicaid and Children's Health Insurance Program are met. Montana is expanding its PCMH pool of pediatricians and other physicians and applying measures to track the quality of care. They are also using team-based, coordinated care to link enrollees and families to support services designed to improve care and control costs.

​Conferences, e-Learning, and Events

• Webinar: Keeping Medicaid's Promise for Children with Special Health Care Needs
  October 2, 2019 from 2 – 3:30pm Central
  Register
  This webinar, sponsored by Manatt Health, Robert Wood Johnson Foundation, and the Lucile Packard Foundation for Children's Health, will outline practical ideas specific to how can state Medicaid agencies, families, advocates,  pediatricians, other physicians, nonphysician clinicians, and other stakeholders partner to improve access to services for Medicaid-enrolled children and youth with special health care needs (CYSHCN). Based on a soon-to-be-released issue brief, this webinar will feature a suite of actions that states can implement to ensure that CYSHCN receive optimal care.
• Upcoming Transition Conferences
• October 23, 2019
  Houston, TX 
  The International and Interdisciplinary Health Care Transition Research Consortium (HCTRC) will hold its 11th Annual HCTRC Research Symposium in conjunction with the 20th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care. 
• October 24-25, 2019
  Houston, TX
  The 20th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care is approved for American Medical Association Physician's recognition Award Category 1 Credits™ which will be co-provided by Baylor College of Medicine and Texas Children's Hospital Association. The conference will address transitioning to adult-based care and provide updated knowledge of strategies for integrating emerging adult-based care into practice. The target audience for this conference includes: physicians in internal medicine, family practice, pediatrics, psychiatry, and physiatry; other health care providers including psychologists, social workers, nurses, dietitians, case managers, counselors, and primary care providers; and youth and young adults who have a chronic illness or disability and their parents or guardians. 
• Association of Maternal and Child Health Programs Accepting Submissions for Presentations
  March 21 – 24, 2019
  Crystal City, VA
  Association of Maternal and Child Health Programs is seeking proposals for poster and session presentations at its 2020 Annual Conference. The theme is The Power of Connections: Building Equity for Healthy Generations. A track is dedicated to children and youth with special health care needs. Directors of state Title V Maternal and Child Health (MCH) / Children and Youth with Special Health Care Needs (CYSHCN) programs, federal officials, advocates, family leaders, researchers, pediatricians, nonphysician clinicians, and other physicians attend the conference. The submission deadline is October 4, 2019.

​Partners and National Initiatives

• Pediatric Experts in Your Own Backyard
  Have you connected with your American Academy of Pediatrics (AAP) local chapter lately? AAP chapters are organized groups of pediatricians, other physicians, and nonphysician clinicians working to achieve AAP goals in their communities. Find your state's chapter site to connect today.
• "The Act of Making a Referral is Not Enough"
  Universal developmental screenings can help identify children who are at risk of having or developing a delay. Children identified by a developmental screen should be referred for further assessment and interventions that will positively impact their lifelong health. An effective screening process relies on successful referrals though—without a referral, families can never access the supports the child may need. This resource, "The Act of Making a Referral is Not Enough", from the National Institute for Children's Health Quality, outlines 5 steps for pediatricians and nonphysician clinicians to build a referral process that works. 
• Medicaid and the Children's Health Insurance Program 101
  This tutorial, developed by the Catalyst Center, gives an overview of Medicaid and the Children's Health Insurance Program (CHIP), the different populations these programs serve, and the changes they are undergoing under health reform. The tutorial also provides details to help readers think about opportunities to improve access to coverage for children and youth with special health care needs (CYSHCN) through communication and collaboration with Medicaid and CHIP staff. The tutorial starts with an overview of how definitions of CYSHCN may vary by agency or program, followed by 12 major topic areas, and then recommendations for steps state Title V Maternal and Child Health / CYSHCN programs can take to build successful partnerships with public insurance programs.
• Five-Year Funding Extension for Family-to-Family Health Information Centers is Now Law
  In August, Sustaining Excellence in Medicaid Act of 2019 was signed that extends funding for Family-to-Family Health Information Centers (F2Fs) for 5 more years at the current funding level of $6 million per year. State F2Fs help families navigate the health care system so their children can get the care they need. The legislation also makes permanent the provision that requires the establishment of F2Fs for territories and tribes. Family Voices reports that this 5-year funding extension will help F2Fs more effectively and efficiently plan ahead, retain experienced staff, and expand partnerships in the community.
• Learn the Signs. Act Early. The Association of Maternal and Child Health Programs State Systems Grant: 8 Years in Review
  A new interactive resource, "Learn the Signs. Act Early. AMCHP's State Systems Grant: Eight Years in Review"  explores strategies for improving state capacity and strengthening state and community systems for early identification and coordination of services for children with autism spectrum disorder and other developmental disabilities (ASD/DD) as part of the Learn the Signs. Act Early. state systems grants. This resource can be used to educate public health professionals, partners, and stakeholders on different implementation strategies to impact services and systems of care for children with ASD/DD and their families. It can also inform those using the resource about challenges faced and lessons learned that they may be able to apply in their work.
• New Autism CARES Act Learning Module
  Association of Maternal and Child Health Programs, in partnership with the Association of University Centers on Disabilities, is pleased to share the e-Learning module, Autism CARES Act 101. This free, self-paced module addresses key facets of the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, including grassroots and legislative origins, how it has evolved since 2006, and resulting federally-funded programming. It also delves into the impact that the Autism CARES Act has had on services and systems that support individuals with autism and their families. The module features brief video interviews with self-advocates, researchers, and public health professionals about their varied experiences supporting and/or implementing legislative priorities. This resource was developed to help orient CARES grantees, and educate public health professionals and leaders, state Title V Maternal and Child Health / Children and Youth with Special Health Care Needs program staff, students, policymakers, and other stakeholders impacted by autism and other developmental disabilities.
• Association of Maternal and Child Health Programs Announces a Focus on Children with Special Health Care Needs
  Noting that 84% of children with special health care needs do not receive care in a well-functioning system, the Association of Maternal and Child Health Programs (AMCHP) has announced that optimizing health for children and youth with special health care needs is a top priority for 2019-2021. In A Bridge for Action, its newly released strategic plan, AMCHP outlines strategies to strengthen the infrastructure of the maternal and child health field and to improve health support for women, children, youth, and families in several critical areas.
• New Publication: Vibrant and Healthy Kids: Aligning Science, Practice, and Policy to Advance Health Equity
  The National Academies of Sciences, Engineering, and Medicine recently released Vibrant and Healthy Kids: Aligning Science, Practice, and Policy to Advance Health Equity—a report that outlines steps needed to move children who are at risk for negative outcomes toward positive health trajectories and reduce health disparities. The science-driven recommendations provided in this report lay out practice, policy, and systems changes. This report can be used by pediatricians, Maternal and Child Health Title V / Children and Youth with Special Health Care Needs programs, family leaders, and others to close the health equity gap and nurture vibrant and healthy children.
• Medicaid Waivers: Home and Community-Based Care Coverage Varies Widely by State
  Much of the care for children with medical complexity (CMC) is delivered in home and community-based settings and covered by Medicaid waivers. Little is known about the economic impact or effectiveness of waivers because their components and coverage have not been well defined. A new study, published in Health Affairs and funded by the Lucile Packard Foundation for Children's Health, analyzes the scope of coverage offered by the waivers and evaluates how states are using waivers to provide care for CMC. The researchers found great variability among states in services offered, which may have an impact on child and family outcomes. Results from this study can be used by state Maternal and Child Health Title V / Children and Youth with Special Health Care Programs.