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

• Year 1 Summary: The National Network for Advancing Systems of Services for Children and Youth with Special Health Care Needs
  The National Network for Advancing Systems of Services for Children and Youth with Special Health Care Needs (the Network) includes 3 organizations: the Catalyst Center, the National Resource Center for Patient/Family-Centered Medical Home (NRC-PFCMH), and Got Transition. The Network collaborates to support state Title V programs, family leadership organizations, health care providers, and other stakeholders.
  
  In the inaugural year, the focus was on establishing the Network infrastructure and conducting a needs assessment to determine key stakeholder priorities. Both state Title V Maternal and Child Health / Children and Youth with Special Health Care Needs (CYSHCN) programs and families endorsed care coordination as a top priority. A summary of the National Network Year 1 activities is now available.
  
  In Year 2, the Network is working collaboratively to identify innovative activities, best practices, and technical assistance strategies to support states in improving or enhancing their care coordination efforts for CYSHCN and their families. Contact the Network with questions at cyshcnnetwork@aap.org.

• Do You Follow Us on Facebook?
  While the National Resource Center for Patient/Family-Centered Medical Home (NRC-PFCMH) bi-monthly e-Newsletter is full of information from the NRC-PFCMH and our partners, the latest implementation information and resources are also posted regularly on our Facebook page. Follow us today!

Additional Implementation Resources 

• How States Use the National Standards to Improve Health Systems for Children and Youth with Special Health Care Needs
  The National Standards for Children and Youth with Special Health Care Needs are used by many state health policy leaders to inform, structure, and improve quality systems of care and ultimately health outcomes for children and youth with special health care needs in their health care systems (CYSHCN). New charts and map from the National Academy for State Health Policy highlight how states have integrated the Standards into their state Medicaid programs and state Title V Maternal and Child Health Services Block Grant Programs.
• Prevent Adverse Childhood Experiences (ACEs): Implement Strategies to Prevent ACEs
  The Centers for Disease Control and Prevention (CDC) released a new report on adverse childhood experiences (ACEs): Vital Signs: Estimated Proportion of Adult Health Problems Attributable to Adverse Childhood Experiences and Implications for Prevention — 25 States, 2015–2017. Adverse childhood experiences can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. However, ACEs are preventable and receiving care within a medical home model is an important component of prevention. This report discusses additional practical strategies to prevent and protect against the impact of ACEs.
• Standards for Compensation of Family Partners in Research
  The Children and Youth with Special Health Care Needs Research Network (CYSHCNet) is a national research network supported by the Maternal and Child Health Bureau. Family partnership is an essential component of patient/family-centered care. The CYSHCNet recently 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 which can enhance family and professional partnerships. 
• Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009–2017
  A new study from the Centers for Disease Control and Prevention published in Pediatrics examines prevalence of 10 developmental disabilities among children ages 3-17 years. Data demonstrate that nearly 18% of children have a developmental disability, an increase from the last two decades. The most prevalent developmental disabilities were found to be attention-deficit/hyperactivity disorder, learning disability, other developmental delay, and autism spectrum disorder. An accompanying AAP News article and commentary are also available.  
• Now Available: New Estimates from the Combined 2017-2018 National Survey of Children's Health
  The Data Resource Center for Child and Adolescent Health (DRC), under a cooperative agreement with the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau (MCHB), announced the release of the child and family health measures from the combined 2017-2018 National Survey of Children's Health (NSCH). The combined 2017-2018 NSCH is the second multi-year data set since the redesign of the NSCH in 2016 and includes data from 52,129 children ages 0-17 years.
  
  The DRC NSCH Overview page has more information and resources on the NSCH, such as fast facts, guide to topics and questions, changes across years, survey methodology, survey instruments, and more. There are also numerous resources available at HRSA MCHB's webpage on the NSCH, including a 2017-2018 NSCH Fact Sheet. Public use files for the NSCH are also available through the US Census Bureau's NSCH page. 
  
  Combined DRC downloadable data sets for 2017-2018 NSCH will be available in winter 2020. Single year 2018 NSCH estimates, downloadable data sets, and codebooks will be available through the DRC in spring 2020. For questions, contact info@cahmi.org. If you are a Title V leader, be sure to note that in your message.
• Quality Improvement Resources and Tools
  As part of a continuous effort to support care teams in the mission to ensure "every child gets the right care every time," the American Academy of Pediatrics (AAP or Academy) has created a new home for various quality improvement resources and implementation tools. The tools and resources are meant to enable pediatricians and their care teams to implement AAP guidance at the point of care, whether that be in the community, clinic, and/or hospital setting. All of the topic-specific tools and resources, as well as additional information on the Academy's quality improvement efforts are now available.
• Updated Guidelines on Attention Deficit-Hyperactivity Disorder
  The American Academy of Pediatrics (AAP) updated its guidelines for treating children with Attention Deficit /Hyperactivity Disorder, changing some criteria for diagnosis, updating current medications, and emphasizing the need to rule out other causes of symptoms. "Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention Deficit/Hyperactivity Disorder (ADHD) in Children and Adolescents," is based on the most recent research on ADHD, a common disorder that can profoundly affect a child's academic achievement, well-being and social interactions. The guidelines address children from age 4 to 18, with special attention provided for care of preschool-aged children (ages 4-6) and teens. An AAP News article, discussing the new guidelines is also available.
• The Healthy Tomorrows Partnership for Children Program (HTPCP): 30 Years of Supporting Innovative, Community-based Interventions to Improve Maternal and Child Health and Access to Care
  The Healthy Tomorrows Partnership for Children Program (HTPCP) is a cooperative agreement between the Health Resources and Services Administration's (HRSA's) Maternal and Child Health Bureau and the American Academy of Pediatrics. Since 1989, public health resources at HRSA have joined with pediatric expertise in child health issues at the AAP. Pediatricians have provided care and served as project directors, advisory board members and consultants in HTPCP initiatives. A key focus of all HTPCP grantees is a focus on the medical home model of care. This recent article in AAP News, highlighted successes and lessons learned from HTPCP projects.
• New Informational Series from the American Academy of Pediatrics: Safe and Sound: Responding to the Experiences of Children Adopted or in Foster Care
  Children and youth who have experienced trauma and adversity need the adults in their lives to recognize and understand how those events may affect their lives—especially their development and behavior. Safe and Sound: Responding to the Experiences of Children Adopted or in Foster Care was developed by the American Academy of Pediatrics with support from the Dave Thomas Foundation for Adoption and Jockey Being Family. This informational series has custom guides for the adults in the lives of these children and youth: A Guide for Parents, which includes a fillable form for the child's pediatrician, outlining his/her past experiences, and a 1-page guide that parents can share with other adults in the child's life; A Guide for Caseworkers; A Guide for Early Education and Child Care Providers; and A Guide for Teachers, Counselors, and Other School Professionals Working With School-Age Children and Youth. The guides can also be used for training and professional development purposes.

​Conferences, e-Learning, and Events

• Annual Early Hearing Detection & Intervention Meeting
  March 8 – 20,  2020 
  Kansas City, MO
  Register Here
  The Annual Early Hearing Detection and Intervention (EHDI) Meeting is dedicated to improving early hearing screening, diagnosis, and intervention systems for infants/young children and their families. This meeting is for state EHDI programs, clinicians, families, academics, and others who care for children who are deaf or hard of hearing. The goal of the meeting is to enhance the implementation of comprehensive state-based EHDI programs. Individuals interested in caring for children with hearing loss in the medical home model of care should consider attending this conference.  
  
•  Association of Maternal and Child Health Programs Annual Conference
  March 21 – 24, 2020
  Crystal City, VA
  Register Here
  The theme of the 2020 Association of Maternal and Child Health Programs Annual Conference 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. Register by February 21, 2020 to receive an early bird rate.
• The Next Steps to Improving Home Health Care for Children with Medical Complexity
  Home health care is critical to many families of children and youth with special health care needs, but the field is sorely in need of attention, according to experts who spoke at a Lucile Packard Foundation for Children's Health webinar in October. The panelists noted that children frequently remain in the hospital long after they are ready for discharge because of a lack of home health care providers with pediatric expertise. The speakers discussed other issues that must be addressed, including pay discrepancies, lack of quality measures, need for pediatric training programs, and the focus on adult over pediatric home health care. They also outlined potential solutions.
• The Family Voices Leadership in Family and Professional Partnerships Program
  The Family Voices Leadership in Family and Professional Partnerships (LFPP) Program recently offered a webinar titled, "Leadership in Family and Processional Partnerships (LFPP): What it is and how you can benefit." The LFPP program offers assistance and training on family engagement, collaborates to identify best practices and resources related to family engagement, and disseminates materials nationally to children and youth with special health care needs stakeholders.
• Introducing the Social Security Disability Insurance Outreach, and Recovery Online Course: Child Curriculum and Video
  Supplemental Security Income / Social Security Disability Insurance Outreach, Access, and Recovery (SOAR) is a national program, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA). The program aims to increase access to the disability income benefit programs administered by the Social Security Administration for eligible individuals who are experiencing or at risk of homelessness and have a serious mental illness, medical impairment, and/or a co-occurring substance use disorder. The SAMHSA SOAR technical assistance center has developed a number of tools and resources available to providers working with children and youth including the new SOAR Online Course: Child Curriculum. The new curriculum teaches case managers all they need to know to complete Supplemental Security Income (SSI) applications for children (under age 18) using the SOAR model. The curriculum emphasizes education and supported employment services that help make it possible for youth to pursue vocational goals and earn additional income, while maintaining benefits. Watch the short, informational video.
• Systems of Care Presentations at the American Public Health Association (APHA) Annual Meeting
  The Association of Maternal and Child Health Programs (AMCHP) presented several sessions the 2019 APHA Annual Meeting. Two of the presentations focused on enhancing systems of care for children and youth, including those with special health care needs. One session, "Addressing and Promoting Title V's Role in Addressing Gaps in Care Coordination for Children and Youth with Special Health Care Needs (CYSHCN)" underscores the importance of Title V programs in promoting high quality, cross-systems care coordination for CYSHCN. Another session presented by AMCHP, "Improving State Systems for Parent-Engaged Developmental Monitoring: A Review of Eight Years of State System-Level Grantee Work" describes major areas where grantees achieved sustainable impacts in improving state systems for early childhood developmental monitoring. Slides from both sessions are downloadable and free to the public.  

​Partners and National Initiatives

• National Academy for State Health Policy Launches New, Redesigned Website
  National Academy for State Health Policy's (NASHP) new website makes it easier to find reports, blogs, maps, and policy briefs necessary to support effective and innovative state health policies. The new website has updated technology, a more user-friendly interface, advanced search and filter features, and more interactive map and charts.
• New Tool Helps States Leverage Prescription Drug Purchasing Power
  As officials explore leveraging their collective buying power to purchase prescription drugs, the National Academy for State Policy (NASHP) has developed a Checklist for Coordinating Public Purchasing of Prescription Drugs. This tool aims to help states establish baseline data across public purchasers and identify opportunities for coordination. A blog post by NASHP highlights how the checklist can be used to help states gather critical data on purchasers' contracts with pharmacy benefit managers, determine how much is spent on drugs based on net cost and utilization, and better understand each purchaser's prescription drug benefits.
• Health Care Transition and Title V Care Coordination
  Got Transition recently released a new report titled "The Progression of Health Care Transition Implementation in State Title V Care Coordination Programs from 2017 to 2019." This report summarizes the results of Got Transition's survey to assess Title V Maternal and Child Health / Children and Youth with Special Health Care Needs (CYSHCN) programs care coordination, reviews trends from 2017-2019, and offers suggestions for improving health care transition. Got Transition highlights the many uses of data from this survey, including integration in health care transition needs assessments, and in state Title V block grant applications.
• "Everything You Need to Know about the ACE Kids Act"
  The Advancing Care for Exceptional (ACE) Kids Act, was signed into law on April 18, 2019. This act allows for a new state plan amendment option, which would provide health homes for children with medical complexity enrolled in Medicaid, beginning in October 2022. The Children's Hospital Association's "Everything You Need to Know about the ACE Kids Act" guide includes an interactive timeline, key talking points, a high-level summary of the act, and a more detailed section-by-section review. 
• Family Resources Page
  The Catalyst Center has updated their online family resources directory. This resource is organized by state and provides links to a wide range of direct service organizations, and important information related to Title V Maternal and Child Health programs. The directory lists resources available in English and Spanish.
• Using the National Standards as a Key Resource to Support the Children and Youth with Special Health Care Needs Workforce
  A high turnover rate among employees in Title V Maternal and Child Health (MCH) / Children and Youth with Special Health Care Needs (CYSHCN) programs is a challenge for states. The Association of Maternal & Child Health Programs (AMCHP) suggests that the National Standards for Systems of Care for CYSHCN may be a helpful tool for developing leadership and workforce capacity. A new report highlights examples of how 3 states use the standards to improve their workforce capacity. The examples highlight MCH workforce areas each state selected and include a concise list of practical, replicable strategies from the National Standards for Systems of Care for CYSHCN utilized to enhance workforce capacity.
• Communication and Support for Families with Complex Medical Conditions
  This podcast hosted by Nationwide Children's Hospital discusses communication and support between families of children with complex medical conditions and their health care clinicians. The podcast features a pediatrician, a child life specialist, and a family faculty member whose son lives with a complex condition. The podcast is free to stream or download.
• Exceptional Parent Magazine: October and November Issues
  The October online issue of Exceptional Parent Magazine is titled, "Employment & Transition" and includes information on work opportunities for teens with disabilities; how working can lead to independence; and transition to work planning. The November online issue is titled, "Financial Planning" and looks at financial concerns of and opportunities for parents for children with special health care needs.
• Parents as Teachers Podcast Series
  Since 1984, Parents as Teachers has worked to build strong communities, thriving families and children that are healthy, safe and ready to learn. The organization does this by matching parents and caregivers with trained professionals who make regular personal home visits during a child's earliest years in life, from prenatal through kindergarten. Parents as Teachers produces a podcast series called Intentional Partnerships where each episode offers a real-world perspective from people exploring shared values around family engagement. The 11-episode season includes voices from teachers, parents, district administrators, early childhood educators, family support professionals, and parent educators about successes and challenges.